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Sjogrens Topics => Living With Sjogren's => Topic started by: jasonsmith on September 29, 2011, 11:52:55 PM

Title: Sjogrens treatment side effects
Post by: jasonsmith on September 29, 2011, 11:52:55 PM
Just wondering from first hand experience wondering what some common side effects are with the various treatments for Sjogrens? I had talked to someone who had eye problems from Plaquenil.

Is there anything serious that can happen from the different treatments?

I'd be worried takign the Plaquenil long term since it can cause eye problems. Is there something similar to Plaquenil that is safer?
Title: Re: Sjogrens treatment side effects
Post by: gurs on September 30, 2011, 04:01:08 AM
Ive had sjogrens for 30+ years and have tried many, many, therapies. Plaquenil is prob the mildest and the first line of treatment.
It also seems to prevent future damage...I know, I was on it for years, thought it wasnt doing anything, so I stopped it, then all heck broke loose..all my neuro issues started etc. I couldnt tolerate any of the other meds...methotrexate, Imuran, cellcept, Arava, and Rituxan and IVIG.
Im taking alot of steriods, and now dealing with all the side effects from that. Im still trying to find something I can tolerate and help me get out of bed.

When on plaquenil, you need to see your eye doc for your 6 month field vision testing, but other than that, wouldnt worry about it so much.
One day at a time.

Not many options for us really...all these medications are toxic and have side effects, but, if it helps with the progression of the disease and gets  you some quality of life, then go for it.

Gursie
Title: Re: Sjogrens treatment side effects
Post by: LizPetillo on September 30, 2011, 04:06:58 AM
Side effects of plaquinel ....

Generic plaquinel made my eyes ache.

So I switched to the real stuff.

Name brand plaquinel has not given me any issues (**Knock on wood).

Been on it a little over a year now.
Title: Re: Sjogrens treatment side effects
Post by: gurs on September 30, 2011, 04:22:51 AM
Liz, does your insurance cover name brand plaquenil?

I know its expensive?

Gursie
Title: Re: Sjogrens treatment side effects
Post by: mshistory on September 30, 2011, 05:28:30 AM
I've only been on generic Plaquenil for a few months but have had no side effects so far (also knocking on wood).
Title: Re: Sjogrens treatment side effects
Post by: anita on September 30, 2011, 05:32:33 AM
Plaquenil is, by far, is the first line treatment with the least side-effects.  Almost all other treatments involve suppressing the immune system which can have significant risks....at a much higher rate of occurrence then Plaquenil side-effects. 

The eye damage from Plaquenil is EXTREMELY rare, especially on the lower doses that is taken with autoimmune diseases.   Did the person you talked to have regular eye checks?  Are they sure is was the Plaquenil?  What were the symptoms?
Title: Re: Sjogrens treatment side effects
Post by: irish on September 30, 2011, 08:00:00 AM
Be aware that plaquenil does cause eye issues, but they are usually seen in people who are on the higher dosages used in the treatment of malaria.

Treatment of autoimmune disease required a much lower dosage schedule and we have had many people on here over the years whose opthalmologists have said that they have never or very rarely seen anyone have problems with their eyes.

The main thing is to have a baseline eye exam before or when you start the med and then every 6 months or so after. It is a condition that is usually reversible if caught early and by doing the 6 month screenings you would be catching it early.

Plaquenil is basically a very strong anti-inflammatory drug that helps treat many of the issues found in autoimmune disease. Everyone responds to it differently but most people find it helps. Some people just can't tolerate the Gastrointestinal problems that they may have. Just have to use it if you are suffering and miserable and see what happens. So far this is doing well and almost a week of plaquenil at 200 mgm a day.

Remember that fear can really inhibit our treatment of these autoimmune issues. The best thing to do is to educate yourself. Also, remember that pretty much 75% of the stuff we read on the internet is not true. There is sl much faulty information out there and we have to really be careful about what we see on the internet and what we believe.

There are just a select few of sites that are trustworthy as far as the medical information is concerned. Mayo Clinic is good and the info by other trustworthy medical centers, but many of the other stuff I have found is down right scary and dangerous. Good luck. Irish ;D
Title: Re: Sjogrens treatment side effects
Post by: LizPetillo on September 30, 2011, 08:52:44 AM
Liz, does your insurance cover name brand plaquenil?
The doctor had to fill out a piece of paper saying that I couldn't tolerate the generic and that I needed the name brand.  So yes, it is covered except for the general co-pay.  (we have Aetna)
Title: Re: Sjogrens treatment side effects
Post by: Jenny on October 01, 2011, 05:17:36 AM
I've only been on Plaquenil for a few weeks, but I have no side effects.  No upset stomach at all luckily.  Not sure if it's a cooincidence, but my back and shoulder are feeling better too.
Title: Re: Sjogrens treatment side effects
Post by: Scottietottie on October 01, 2011, 09:09:36 AM
Hi  :)

Many, many meds can cause side effects but many, many people take them without suffering any. Plaquenil caused eye problems are incredibly rare but because it is serious if it happens it's important to have regular eye checks when taking it. Plaquenil can also raise liver readings as can Tramadol and paracetamol. NSAIDs can cause stomach ulcers and bruising and the more aggressive treatments like pred and methotrexate can do nasty things long term but not inevitably.

It's a case of trying things to see what works for you and weighing up quality of life with the alternative.

Take care - Scottie  :)
Title: Re: Sjogrens treatment side effects
Post by: Luna on October 01, 2011, 01:16:18 PM
I have only used generic plaquenil . Doctor started me on this and I am afraid to tell him I still hurt. Don't want to move on to the others.  Only been using Plaquenil sinse June of this year. I didn't think it was helping at first , then stopped for a few days and realised it was.. The pain is still there, but not as bad without it. The only side effects I had was Diariah. Only for the first month. After that, no problems. I do notice that it curves my appitite. I do not eat like I used to. Which has caused me to loose some weight. Only ten pounds in 5 months, so Im not worried about it.

Luna
Title: Re: Sjogrens treatment side effects
Post by: Sadie963 on October 01, 2011, 02:28:03 PM
I have been taking generic low dose Plaquenil for 8 mos. I just went to my eye dr. for the 1st checkup.
My eyes looked ok when she examined them but there was an issue with my visual field test. The tech brought it to the dr. to review and she said she would add it to her report for my rheum. and neither of them went over it with me. However I did see the results when the tech removed it from the machine. One of my eyes did not test well in one of the 4 quadrants. I'm still waiting for my rheum. dr. to receive the eye dr report and results.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 02, 2011, 04:40:41 AM
I was on plaquenil for around 8 years when I thought it wasnt doing anything..so, I stopped it and I got super sick about a month later.
All my neuro issues kicked in and my hair loss was super bad. It seems to really be a great modifier of SS, and some of us also need additional medications to help. I dont think Ive heard of 1 person that feels 100% on any of our treatments. Plaquenil is supposed to take up to 1 year to work as well for some, but i noticed a difference in my dry eyes and mouth right away. Maybe switching generic brands or getting your doc to write a script that indicates you can only use the name brand plaquenil.

Everything is risky...of course, if your having eye issues, that is another story.

Gursie
Title: Re: Sjogrens treatment side effects
Post by: Joe S. on October 02, 2011, 06:15:34 AM
I had some rather severe challenges with Plaq and MTX so I have had to find other methods to manage the symptoms of this dis-ease. You can still live and enjoy your life. I know that most people do not like the concessions that they have to make with these health challenges. That is why I recommend "Spoon Theory" and I posted the Pain Management topic.
Title: Re: Sjogrens treatment side effects
Post by: aussie mum on October 02, 2011, 12:11:12 PM
My daughter has tried a few different medications for her SJS with no luck - Plaquenil ( too many stomach issues), Prednisone ( extreme headaches and nightmare/hallucinations) and Sulfa (found she was allergic). Her Dr has talked about MTX but she has not tried that yet.

Luckily she is feeling relatively well (most of the time) just by treating her Underactive Thyroid and Insulin Resistance. She is not willing to try anything else for the SJS at the moment.

take care,
Aussie Mum


Title: Re: Sjogrens treatment side effects
Post by: Joe S. on October 02, 2011, 04:26:15 PM
welcome Sadie963
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 05:32:17 PM
Plaquenil is, by far, is the first line treatment with the least side-effects.  Almost all other treatments involve suppressing the immune system which can have significant risks....at a much higher rate of occurrence then Plaquenil side-effects. 

The eye damage from Plaquenil is EXTREMELY rare, especially on the lower doses that is taken with autoimmune diseases.   Did the person you talked to have regular eye checks?  Are they sure is was the Plaquenil?  What were the symptoms?

I'm not sure if they had regular eye exams. But just searching google for Plaquenil and eyes you will come across numerous posts of people who've had eye problems. I've read a bunch of people having serious eye problems in the first 6 months. The other problem is you are dependent on your eye doctor. As I've read alot of people who've had regular eye exams, to have a real decline in eye function. They go to another eye doctor who noticed right off they had Plaquenil toxicity that had been missed by the other eye doctors. But once they see the damage, it's already done. I've read of some reporting eye changes to their Rhemy and eye doctors. Who said it wasn't the Plaquenil. So, they kept taking it while their eyes further declined. Then it turned out to be from Plaquenil toxicity. Too much of a risk for me when I can try other things first.

It's seem to me more common than is believed.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 05:38:41 PM
Be aware that plaquenil does cause eye issues, but they are usually seen in people who are on the higher dosages used in the treatment of malaria.

Treatment of autoimmune disease required a much lower dosage schedule and we have had many people on here over the years whose opthalmologists have said that they have never or very rarely seen anyone have problems with their eyes.

The main thing is to have a baseline eye exam before or when you start the med and then every 6 months or so after. It is a condition that is usually reversible if caught early and by doing the 6 month screenings you would be catching it early.

Plaquenil is basically a very strong anti-inflammatory drug that helps treat many of the issues found in autoimmune disease. Everyone responds to it differently but most people find it helps. Some people just can't tolerate the Gastrointestinal problems that they may have. Just have to use it if you are suffering and miserable and see what happens. So far this is doing well and almost a week of plaquenil at 200 mgm a day.

Remember that fear can really inhibit our treatment of these autoimmune issues. The best thing to do is to educate yourself. Also, remember that pretty much 75% of the stuff we read on the internet is not true. There is sl much faulty information out there and we have to really be careful about what we see on the internet and what we believe.

There are just a select few of sites that are trustworthy as far as the medical information is concerned. Mayo Clinic is good and the info by other trustworthy medical centers, but many of the other stuff I have found is down right scary and dangerous. Good luck. Irish ;D

What I was reading is other peoples postings on other message boards just like this one. Some problems people had is their eye doctor said they could detect Plaquinel toxicity. But they had eye problems and went to another eye doctor who discovered their prior eye doctor failed to detect Plaquinel toxicity.

I've read alot of posting of people who had a rapid delcine in vision within a 6 month period that was permanent and left almost blind. So, sounds like Plaquinel toxicity can occur over a long period of time or over just a few months. What I've read is once they see damage, then the damage is done. No going back as I believe the Plaquinel eats holes in the retina.
Title: Re: Sjogrens treatment side effects
Post by: Meld256 on October 02, 2011, 07:08:23 PM
Hi jason,

We all have our own beliefs about how we feel about certain treatments and if we feel safe taking them.  In answer to your question about Plaquenil and it's safety for the eyes, it seems many of us feel that the benefits outweigh the risks. 

We are all entitled to our opinions. Since you don't feel comfortable with the thoughts of taking Plaquenil, I hope that you are able to find other treatment options that help.  ;)
Take care,
Melinda
Title: Re: Sjogrens treatment side effects
Post by: stephL on October 02, 2011, 07:16:39 PM
Jason, I understand the reluctance you are feeling. We have all had the same concerns and it's stressful! I'm glad that you are weighing the options carefully. Knowledge is power, it pays to be informed and learn from the experience of others. The worst we generally see here is that people have stomach upset, a few have had an issue with nightmares. I believe that Plaquenil is safe as long as we are careful to watch for any adverse effects. I wish there were some better options and I know there will be in the future, but for now Plaquenil carries lowest risk in exchange for protection from disease progression and risk of complications. It also improves symptoms. It's a psychological shock when you're newly diagnosed. You're going through an adjustment and you sound like you need some time to give it more thought. Please keep reading and posting here. Know that you're not alone and you have a whole community here who will support you with any challenges you face. I'm glad you found us, welcome!
Title: Re: Sjogrens treatment side effects
Post by: Carebear on October 02, 2011, 08:26:29 PM
I have been on Plaquenil since last December.  It had caused me to feel nervous so I am on a dose of 200 mg now, with much success.

I began MTX four weeks ago and only have mild nausea which seems to decrease with each passing week.  ;D 

I work in a partnership with my rheumy, and each medication decision is made carefully after much conversation and thought.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 09:40:23 PM
What's the usual alternative to Plaquenil?

They say once the damage is done, there is no reversal. And you are really dependent on your eye doctor knowing what they are doing. Though, I've read of some having eye problems, where their eye doctor said they didn't see anything. And so, they were told to keep taking Plaquenil, just to have further decline in eye function.

Are there any other serious risks from other meds used to treat Sjogren's?
Title: Re: Sjogrens treatment side effects
Post by: stephL on October 02, 2011, 10:07:46 PM
The next step would be immunosuppressants like steroids,  and chemotherapy drugs like Methotrexate. (MTX, as Carebear mentioned) A lot of people who post here take MTX and do fine on it.

http://en.wikipedia.org/wiki/Methotrexate (http://en.wikipedia.org/wiki/Methotrexate)
http://en.wikipedia.org/wiki/Prednisone (http://en.wikipedia.org/wiki/Prednisone)

Edit: I didn't mean to say that people don't do well on Prednisone, they do. The symptom relief with Prednisone is usually very good to terrific, but people often complain about the side effects.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 10:20:02 PM
The next step would be immunosuppressants like steroids,  and chemotherapy drugs like Methotrexate. (MTX, as Carebear mentioned) A lot of people who post here take MTX and do fine on it.

http://en.wikipedia.org/wiki/Methotrexate (http://en.wikipedia.org/wiki/Methotrexate)
http://en.wikipedia.org/wiki/Prednisone (http://en.wikipedia.org/wiki/Prednisone)

Edit: I didn't mean to say that people don't do well on Prednisone, they do. The symptom relief with Prednisone is usually very good to terrific, but people often complain about the side effects.

Are there other things that are similar to Plaquenil in that it isn't an immunosuppressive?
Title: Re: Sjogrens treatment side effects
Post by: stephL on October 02, 2011, 10:34:29 PM
Are there other things that are similar to Plaquenil in that it isn't an immunosuppressive?

None that I know of. The problem is that Sjogren's isn't well understood and further research is sorely needed. The good news is that there has been increased interest recently, so we have reason to be hopeful that new treatments will be developed.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 10:37:48 PM
I read this article on Plaquenil:

http://www.edmondseyecare.com/information/articles/ChloroquinePlaquenilandtheeye.html

It did mention something about newer forms of Chloroquine with regards to reducing the chance of side effects.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 10:45:36 PM
Actually I've already noticed something with my eyes. When the lighting is right. When say I'm looking to the left. Then rapidly move my eyes straight ahead. Mostly in my left eye I'll see a transparent wave thing go by. It's always the same. If I do it looking at the sky, the wave thing's line looks darker. I kinda notice it some in my right eye. I don't believe it's  floaters. As I know what those look like, and those don't really move. And floaters look more like worms. This looks more like a transparent wave in the upper part of the eye. At first I thought it was just the fluid on top of the eye moving, but I don't think it is since it does the same thing with my head at and angle. And I notice it the same with contacts in.
Title: Re: Sjogrens treatment side effects
Post by: stephL on October 02, 2011, 10:51:28 PM
Yep they are being conscientious to post warnings because it needs to be monitored regularly. But it does also say that there is a way to avoid vision being affected:

"but continued vigilance and regular exams are the only sure way to avoid potential problems with this class of drugs"

You would be relying on your eye doctor. But all doctors seem to take this issue very seriously. Do you live near a teaching hospital where you could see an eye doctor?

Dr. Vivino of The Sjogren's Clinic at University of Pennylvania is a leading expert on Sjogrens and he's stated that eye complications from Plaquenil are rare. This reassured me.

Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 02, 2011, 11:20:32 PM
Yep they are being conscientious to post warnings because it needs to be monitored regularly. But it does also say that there is a way to avoid vision being affected:

"but continued vigilance and regular exams are the only sure way to avoid potential problems with this class of drugs"

You would be relying on your eye doctor. But all doctors seem to take this issue very seriously. Do you live near a teaching hospital where you could see an eye doctor?

Dr. Vivino of The Sjogren's Clinic at University of Pennylvania is a leading expert on Sjogrens and he's stated that eye complications from Plaquenil are rare. This reassured me.

I live in a small town. Though having to see the eye doctor every 6 months does add cost to the medication. I believe it is recommended to see an Opthamologist instead of a regular eye doctor. Which also adds in cost.

I had read too that the eye problem side effect was rare. But then I kept reading a ton of posts on the net from people who've had this "rare" side effect from Plaquenil for it to be of concern. I figured if it was rare, there wouldn't be that many people having eye problems. Some of them have been taking it for years, other hadn't been taking it that long. I had read of a few cases where they went nearly blind in a 6 month period. So, either their eye doctors didn't notice the eye changes from their eye exams, or their eyes rapidly declined.

I did read in the article that you have greater risk the longer you are taking Plaquenil. If I was taking Plaquenil, I'd probably take breaks from it from time to time to help reduce the chance of toxicity.
Title: Re: Sjogrens treatment side effects
Post by: stephL on October 03, 2011, 04:40:42 AM
Well forums are where people with problems come to vent and those have the most troubling issues will be most visible. The majority of people who are happy with Plaquenil are not in need of support so we won't hear from most of them. Plaquenil has been on the market a long time, well tested in the population with relatively large numbers of people who have taken it. There won't be any surprise side effects as there might be with a drug that is new on the market.

Plaquenil isn't the kind of medication that works well taken in bursts since it works slowly over time by building up in your system. I think you might be better off taking a lower dose than taking breaks. But whether you decide to take breaks or a lower dose, you will have less protection against complications.

How long ago were you diagnosed Jason?

Title: Re: Sjogrens treatment side effects
Post by: Jellyb on October 03, 2011, 06:09:31 AM
Hi Jason,
I am one that has had some trouble tolerating the plaquenil. The higher dose ( 300 mg ) gave me terrible anxiety and bad dreams, nausea. I am now on only 100 mg every other day and that so far is working for me. It has helped with the fatigue slightly and my glands are not swollen antmore and my lymphnodes under my arms are not as painful.

This drug scares me too and I dont want to be on it forever, so I am having my eyes checked as suggested and for now this is I guess the best option. I ave an appointment tomorrow with my doctor and I am going to ask about any alternatives, though I doubt there is anything new out there.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 04, 2011, 01:25:59 AM
Well forums are where people with problems come to vent and those have the most troubling issues will be most visible. The majority of people who are happy with Plaquenil are not in need of support so we won't hear from most of them. Plaquenil has been on the market a long time, well tested in the population with relatively large numbers of people who have taken it. There won't be any surprise side effects as there might be with a drug that is new on the market.

Plaquenil isn't the kind of medication that works well taken in bursts since it works slowly over time by building up in your system. I think you might be better off taking a lower dose than taking breaks. But whether you decide to take breaks or a lower dose, you will have less protection against complications.

How long ago were you diagnosed Jason?

I haven't been diagnosed. My bloodwork always comes back good. But I have the fatigue, joint pain, muscle problems, dry eyes, sincus, mouth, IBS, etc. It all gets worse over time. Been over a decade since it started. I think it started from a viral infection as I noticed my first symptom back in school when I fooled around with someone one day that I hadn't seen in a while. I remember going to bed that night tired, then getting up tired. Then that started my sleep disorder where I could hardly get up to go the school which got worse over time. Then noticed achy joints, fatigue, brain fog, bad breath, cavities, IBS, etc.

I get sore real easily. ie. picking something up. Or doing something can leave me sore for a week. It was really hard working as I couldn't do much. Even walking, my legs will soon turn to jello. When doing something... walking, bending, grabbing, etc. As I do it, it gets harder and harder in a matter of minutes almost like the blood supply has been cut off like an ischemic. I do wake up alot at night with parts of my body numb and soon goes away. The best way to describe what it feels like is half way being in a coma. Or maybe being shot with 1/2 dose of a tranquilizer dart.

But my reason for thinking Sjogrens is because the Ear nose throat doctor has always commented on my sinus's being real dry. I do remember over a decade ago when these problems started having a problem with bad breath and all of a sudden getting alot of cavities. Which I'd think would be from dry mouth. But also my Schirmers test is 0 for both eyes.

I had seen two different Rhemys. They both didn't think I had Sjogrens, though they really weren't interested in talking about it at all when I mentioned it. And they really weren't interested in discussing my symptoms much. One Rhemy had me try Prednisone for a month or so, I reported that I didn't notice anything. So, he told me he could'nt do anything more for me. The other Rhemy I saw didn't really do anything since my bloodwork is good. I did mention the Schirmers test of being 0. But he said he didn't think the test was done right because I think they numbed my eyes before the test. But not really sure. But I don't really think it would matter either way. But talking to them was like talking to a brick wall as they would keep telling me my bloodwork is good.

Anyways, I'm going to see another Rhemy who some here on this board see for Sjogrens. So, hopefully he will look at the symptoms instead of only relying on bloodwork. I have read that for autoimmune that the symptoms can show up long before it shows up in the bloodwork.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 04, 2011, 01:27:15 AM
Hi Jason,
I am one that has had some trouble tolerating the plaquenil. The higher dose ( 300 mg ) gave me terrible anxiety and bad dreams, nausea. I am now on only 100 mg every other day and that so far is working for me. It has helped with the fatigue slightly and my glands are not swollen antmore and my lymphnodes under my arms are not as painful.

This drug scares me too and I dont want to be on it forever, so I am having my eyes checked as suggested and for now this is I guess the best option. I ave an appointment tomorrow with my doctor and I am going to ask about any alternatives, though I doubt there is anything new out there.

Let me know what other treatment they suggest. You can PM me if you want. Thanks for the update.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 04, 2011, 01:37:27 AM
"Here is a look at the 2011 testing guidelines for patients on Plaquenil guidelines."

http://www.revoptom.com/content/d/research_review/c/27904/

http://www.revoptom.com/content/d/comanagement/i/1480/c/27872/

I have read that Plaquenil toxicity can continue long after you have stopped taking Plaquenil. Though, looks like Plaquenil is a newer version and less toxic than Chloroquine. It would be nice if they'd come up with a newer version of Plaquenil that was safer or eliminated the eye risk.
Title: Re: Sjogrens treatment side effects
Post by: Jellyb on October 04, 2011, 01:15:34 PM
Hi jason,
Well I had my visit with my regular doctor today. She is very kind and is into natural alternatives also, which is always my first choice. That said, she really believes ther is no alternative to plaquenil as being the first line of defense with the least amount of side effects. She is well aware that I have not tolerated it well, but encourages me to stay on this very low dose of 100mg every other day to help stop the progression and permanent damage to my glands

I asked about the " low dose" naltrexone. And she said it was not very effective and it has its own set of side effects.

She also agreed with the gluten free, anti inflammatory way of eating and wants me to add tumeric to my list of supplements for the joint swelling.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 04, 2011, 01:39:35 PM
Again, there arent many options for us. Plaquenil is the first line treatment for SS and lupus. Ive been playing around with different meds and therapies like Methotrexate, Cellcept, Arava, Imuran, Rituxan, -all very potent and toxic..my body couldnt tolerate them at all...

Ive been into the alternative stuff as well.....still take alot of supplements etc....but, when I stopped my plaquenil after years on being on it, my autoimmune got 50% worse and then all my neuro issues came out, lost tons of hair, etc. I believe it really helped keep things under control.
Im now on 20mg of steriods for the last 1.5 years, and have all the lovely side effects of this as well. Everything seems to come with a price.

As your aware, these autoimmune diseases are very hard to treat...they attack our organs and sometimes, we need medical treatments.
Dont let the side effects scare you.....everything is a risk. It  really also might help you feel better?

If you try it and are having problems, go from there.

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 12, 2011, 09:25:06 PM
What supplements are there for autoimmune diseases?

Gurs,

One problem with Plaquenil is that once you notice problems like with your eyes, they probably will be permanent.

I don't think I have a competent eye doctor at least locally who can properly check for Plaquenil Toxicity. Its recommended to see an Opthamalogist. Though the local Opthamalogists only see people with say cataracts, etc. I recently had a routine eye exam with my Optomitrist. He was aware of Plaquenil and mention one of his patients had eye problems with it. Though that patient was taking the older Chloroquine.

I asked if he was able to check the eyes for Plaquenil Toxicity, as some people had routine eyes exams and the toxicity was missed anyways. He said, which I already knew, that once he sees damage, then the damage is permanent. But said he would rely on the peripheral vision test. But I think all the eye tests are just as important as sometimes they can see the buildup inside your eye before you notice any visual changes.

Though, I plan on trying something if a Rhmy is willing to treat. The last two I've seen didn't do much. This new one I'm trying to see requires alot of stuff from your doctor before they'll make an appointment. So, I've been waiting a long time for that to get done.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 13, 2011, 04:54:10 AM
I mean supplements like Fish oils, glucosamine/chondroitin, etc..many people can find relief with some of these things, but to me, it
wont stop the progression of the disease, but it may help lessen some of the symptoms.

I know that plaquenil has been around for years. I also remember that they said if any eye damage were to happen, would not be permanant?
I know the visual field test is recommended every 6 months. I wouldnt worry to much about it, but sounds like you need
a new opthamologist-not an optometrist. Plaquenil is also prob the least toxic of any of the other meds like methotrexate, Imuran, Arava, etc.
Again, we dont have many choices..every medication I believe is risky. A good rheumy should be able to help you, if not, start looking for another doc. Ive seen countless doctors, and you really have to trust and believe in them.

Good luck..

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 06:09:58 AM
I mean supplements like Fish oils, glucosamine/chondroitin, etc..many people can find relief with some of these things, but to me, it
wont stop the progression of the disease, but it may help lessen some of the symptoms.

I know that plaquenil has been around for years. I also remember that they said if any eye damage were to happen, would not be permanant?
I know the visual field test is recommended every 6 months. I wouldnt worry to much about it, but sounds like you need
a new opthamologist-not an optometrist. Plaquenil is also prob the least toxic of any of the other meds like methotrexate, Imuran, Arava, etc.
Again, we dont have many choices..every medication I believe is risky. A good rheumy should be able to help you, if not, start looking for another doc. Ive seen countless doctors, and you really have to trust and believe in them.

Good luck..

Gursie

Plaquenil damage generally isn't reversable. Once its there, its there. Though some may be reversable if the problem is build up of Plaquenil vs. damage. Even if you start having eye problems and stop Plaquenil. The damage can keep getting worse for years afterwards.

I wonder if the problem could be more common than what "they" say. As people with vision problems obviously would have problems reading and typing on the internet. Thus probably most of the people with eye problems from Plaquenil Toxicity probably aren't on the internet talking about it. That's just a guess though. And I wouldn't be surprised if alot of people with eye problems from Plaquenil would even know it was because of Plaquenil. A Rhmy gave me some Prednisone to try, and he didn't go over any risks with the medication. You figured the doctors would go over the risks of these types of medications instead of just giving it to you like candy.

Here's an interesting read of someone with Plaquenil Toxicity. Though he started taking it 20+ years ago. So, maybe he was taking a higher dose than what is currently recommended. As I believe they have lowered the recommended dose to help prevent toxicity.

http://judybland.blogspot.com/

I can't see an Opthamologist. At least locally. I've tried before, but all of the offices for them say only people with cataracts and surgery, etc. see the Opthamologist. They don't do routine eye exams. That's left up to the Optomotrist is what they say.

I could ask again for an Opthamologist if I do decide to take Plaquenil if a Rhmy wants me to take it. I think probably someone better to see would be a retina specialist.

I'm thinking what may be best is to rotate medication. That way you aren't taking any one kind of medication consistently for a long period of time. That may lessen the risks of long term problems from these meds. As the big risk with these meds is the long term use of them. I had read of someone who only takes Plaquenil for 5 days a week so he has some down time so the body can better remove the Plaquenil. That's probably what I'd do too.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 13, 2011, 06:50:09 AM
I cant believe you cant find an opthamologist that will see you? I never heard of that?

All medications have there risk..if your lucky enough to find one that makes you feel better, and is controlling your symptoms, you
would be very lucky...plaquenil takes at least 1 year to work they say. Prednisone has nasty side effects. Ive been on it for over 10 years now and for the last year, been taking more medrol, now having all the side effects of steriods...hair loss, fat face, bone problems, possible glacoma, the list goes on,  But, I dont have a choice right now. Ive tried them all...methotrexate, Imuran, Arava, cellcept, IVIG, Rituxan..
all which have left me feeling even sicker. Look at the side effects of Rituxan, which is a chemo drug.

Plaquneil stays in your system for awhile....so the rotating thing I dont get either? I know some people on this site have had vision issues with plaquneil and have had to stop it...just like alot of the other medications that alot of us cant take. The choice is yours basically.

Good luck in whatever you decide to do..

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 06:57:01 AM
I cant believe you cant find an opthamologist that will see you? I never heard of that?

All medications have there risk..if your lucky enough to find one that makes you feel better, and is controlling your symptoms, you
would be very lucky...plaquenil takes at least 1 year to work they say. Prednisone has nasty side effects. Ive been on it for over 10 years now and for the last year, been taking more medrol, now having all the side effects of steriods...hair loss, fat face, bone problems, possible glacoma, the list goes on,  But, I dont have a choice right now. Ive tried them all...methotrexate, Imuran, Arava, cellcept, IVIG, Rituxan..
all which have left me feeling even sicker. Look at the side effects of Rituxan, which is a chemo drug.

Plaquneil stays in your system for awhile....so the rotating thing I dont get either? I know some people on this site have had vision issues with plaquneil and have had to stop it...just like alot of the other medications that alot of us cant take. The choice is yours basically.

Good luck in whatever you decide to do..

Gursie

Thanks. My idea of rotating is it will give time for the Plaquenil to leave your body while you are taking something else. To help keep the Plaquenil from building up. But then again, maybe the build up is how it works.

Pretty much if you try and make an eye appointment here with an Opthamologist. They will turn you away and tell you to go see an Optomotrist.

I think in the long term. I'd avoid steroids like Prednisone. As their long term side effects are very likely. I'd only use steroids for the short term use. Wouldn't do me any good as I get older to lose my eyesite to glaucoma and start breaking bones.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 07:55:31 AM
Hi All,
I posted this before but perhaps it was lost.  I've been licensed and certified with 2 science degrees and have been working with Ophthalmologists for 25 years.  I'm now in a large University Ophthalmology practice for 16 years.  I spoke to one of our most well known and oldest Retina Specialists and in his history (~35 yrs) of examining eyes he's seen maybe 1 person on plaquenil with bullseye maculopathy and that was years ago when they prescribed higher dosages.  If spotted on a visual field and the plaquenil is stopped immediately.....the damage if small can reverse.  Also, we see deposits in corneas from plaquenil but very seldom....these deposits are reversible and do not cause any visual disturbances.  I am worse in the summer so I am probably going to start plaquenil after the winter ends so I want to make sure I know the visual side effects.  Look at the alternative:  if you don't start treating you may end up with some real dry eye issues that compromise the cornea which in my experience is more frequent than bullseye maculopathy.  Once you begin getting corneal abrasions and then ulcers, a cornea transplant could likely be in your future and you DON'T want to go there!!  So that being said, the less likely consequence would be to try to slow down the progression on medication and take your chances on Plaquenil not damaging your retina.   The above is only my opinion and experience through the years and I hope it's helped.  Let me know if you have any other questions.
wishing us all the best of luck with prayers!   Jill
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 08:10:20 AM
Hi All,
I posted this before but perhaps it was lost.  I've been licensed and certified with 2 science degrees and have been working with Ophthalmologists for 25 years.  I'm now in a large University Ophthalmology practice for 16 years.  I spoke to one of our most well known and oldest Retina Specialists and in his history (~35 yrs) of examining eyes he's seen maybe 1 person on plaquenil with bullseye maculopathy and that was years ago when they prescribed higher dosages.  If spotted on a visual field and the plaquenil is stopped immediately.....the damage if small can reverse.  Also, we see deposits in corneas from plaquenil but very seldom....these deposits are reversible and do not cause any visual disturbances.  I am worse in the summer so I am probably going to start plaquenil after the winter ends so I want to make sure I know the visual side effects.  Look at the alternative:  if you don't start treating you may end up with some real dry eye issues that compromise the cornea which in my experience is more frequent than bullseye maculopathy.  Once you begin getting corneal abrasions and then ulcers, a cornea transplant could likely be in your future and you DON'T want to go there!!  So that being said, the less likely consequence would be to try to slow down the progression on medication and take your chances on Plaquenil not damaging your retina.   The above is only my opinion and experience through the years and I hope it's helped.  Let me know if you have any other questions.
wishing us all the best of luck with prayers!   Jill

Thanks. Has he seen alot of patients who have taken Plaquenil? I got worried as I have read alot of people who's eye doctors missed the toxicity. But maybe they were one the higher dosage.

Do you know what the higher dosage was? And when were the higher dosages being prescribed? I think right now, max daily is 400mg. But I don't know what is considered a "high" dosage.

One problem I have is my bloodwork always comes back normal. So, no doctor would do anything. But I think Sjogrens is very likely as I'm a young male with dry eyes, mouth, sinus, plus with bad fatigue, joint pain, muscle pain. I'm going to see a new Rhymy at some point so hopefully he is willing to treat vs. do nothing.

Though, I'm guessing he may want to do a lip biopsy or something since my bloodwork is normal. But I wouldn't be interested in that because of the cost. And because it isn't real accurate. It's a shot in the dark. Plus you have the possibility of permanent numbness where they go in at.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 08:21:07 AM
Yes, he's a retinal specialist so all he's examined and done surgery on through the years are "retinas"......this is a specialist you'll want like a rheumatologist for SS.....it's not that other docs can't read visual fields and find changes ....  I can detect changes in a field of vision and I'm not an MD!   But if you're worried then I say go with a retina specialist and not a general opthalmologist.  I will be seeing our specialist this week and asking him how many cases he's seen in his future.  Being that he is much younger I would say he probably hasn't seen any due to the low dosages of Plaquenil.  I've witnessed mostly 400mg daily dosages....if not well tolerated I'm willing to even try 100-200 to see if I get any relief.  It's individual for sure and I would bet your Rheumy will work with you to get you started comfortably.  My Mom has RA and MG and has been on tons of toxic medications probably given too late to see any positive effects on her joints but pain has been less and more remissions through the years.  She's got SS with the RA but has had no side effects from toxic medications except tummy issues for which she takes 2 Prilosec per day.  She's 80 yrs old and still getting around and has unbelievable vision (especially with being born with crossed eyes and having cataract surgery)...she see's things without glasses that I can't see with glasses...."eagle eyes"!!  So, the trade off has worked for her in that she can even drive on good days and prior to toxic meds she was practically bedridden!
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 08:29:51 AM
Yes, he's a retinal specialist so all he's examined and done surgery on through the years are "retinas"......this is a specialist you'll want like a rheumatologist for SS.....it's not that other docs can't read visual fields and find changes ....  I can detect changes in a field of vision and I'm not an MD!   But if you're worried then I say go with a retina specialist and not a general opthalmologist.  I will be seeing our specialist this week and asking him how many cases he's seen in his future.  Being that he is much younger I would say he probably hasn't seen any due to the low dosages of Plaquenil.  I've witnessed mostly 400mg daily dosages....if not well tolerated I'm willing to even try 100-200 to see if I get any relief.  It's individual for sure and I would bet your Rheumy will work with you to get you started comfortably.  My Mom has RA and MG and has been on tons of toxic medications probably given too late to see any positive effects on her joints but pain has been less and more remissions through the years.  She's got SS with the RA but has had no side effects from toxic medications except tummy issues for which she takes 2 Prilosec per day.  She's 80 yrs old and still getting around and has unbelievable vision (especially with being born with crossed eyes and having cataract surgery)...she see's things without glasses that I can't see with glasses...."eagle eyes"!!  So, the trade off has worked for her in that she can even drive on good days and prior to toxic meds she was practically bedridden!

Actually I can't see an Opthamologist locally since their offices all tell you to go see an Optomitrist for eye exams. But I might could ask again if I decide to take Plaquenil.

I appreciate you asking him if he has seen any patients with eye problems from Plaquenil Toxicity. If you could, also ask him if he's heard of other doctors with patients who've had eye problems from Plaquenil.

I really hope all the people who post on the net about having eye problems were on high dosages. As that would give less worry for those who are on a low dosage.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 08:50:22 AM
Jason, So far I've had 3 Ophthalmologists plus an OD say that they can't remember seeing any toxicity in the macula from Plaquenil.  Remember, I'm in a University practice so we see the worst of the worst that other private guys don't want to deal with.
Another product recommended to me by eye specialists is the "Thera Tears Nutrition".....I was taking fish oil and then Krill Oil for years which ended up giving me more heartburn/indigestion issues than I ever thought it would (krill is pretty strong) so I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination.  They say it may help with eye as well as mouth dryness and I sadly was leaving vitamin E out of my supplements which was no good.  I don't have any indigestion or fishy taste with this altho I don't take the recommended 3 per day I feel it is helping me like my other krill oil supplements but now with lots of Vit E and flaxeed mixed with fish oil.  I get 90 capsules for $14.99 a bottle.  Vit E is so important for our bodies and it helps with the metabolism of the Omega 3's.  Just a suggestion.  If you can't find it OTC ask the pharmacy because sometimes they just stock it behind the counter but you don't need a prescription.  Lots of folks who had Lasik and were left with real dry eyes really like this product!
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 09:09:10 AM
Jason, So far I've had 3 Ophthalmologists plus an OD say that they can't remember seeing any toxicity in the macula from Plaquenil.  Remember, I'm in a University practice so we see the worst of the worst that other private guys don't want to deal with.
Another product recommended to me by eye specialists is the "Thera Tears Nutrition".....I was taking fish oil and then Krill Oil for years which ended up giving me more heartburn/indigestion issues than I ever thought it would (krill is pretty strong) so I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination.  They say it may help with eye as well as mouth dryness and I sadly was leaving vitamin E out of my supplements which was no good.  I don't have any indigestion or fishy taste with this altho I don't take the recommended 3 per day I feel it is helping me like my other krill oil supplements but now with lots of Vit E and flaxeed mixed with fish oil.  I get 90 capsules for $14.99 a bottle.  Vit E is so important for our bodies and it helps with the metabolism of the Omega 3's.  Just a suggestion.  If you can't find it OTC ask the pharmacy because sometimes they just stock it behind the counter but you don't need a prescription.  Lots of folks who had Lasik and were left with real dry eyes really like this product!

Thanks. Let me know what you find out when you see the retina specialist.

I've got a bottle of that Thera tears. I bought it at my eye doctors office at my last visit. Though, I already had a big jar of Omega 3 and also the Flaxseed. But I figured I'd take the Thera Tears to try. I take 3 a day.

From what I've read. Is that it is possible to have eye problems from Plaquenil even though the eye exams are good. Though there are some docs apparently that didn't know what they were looking for as they missed the Plaquenil toxicity in the eye exams, then people kept losing their vision.

If my Rhymy wants to do Plaquenil. I'll probably give it a try and keep it at a low dose.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 09:15:15 AM
Once your insurance company knows you want an Ophthalmologist due to medical reasons......there should be no reason you can't see one.  Get a "retinal specialist" and you won't see any "misses" when it comes to finding toxicity in the retina!
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 09:30:46 AM
Once your insurance company knows you want an Ophthalmologist due to medical reasons......there should be no reason you can't see one.  Get a "retinal specialist" and you won't see any "misses" when it comes to finding toxicity in the retina!

Well, I don't have eye insurance. I get Medicare in a little over a year. Not sure if that has eye insurance. But I pay out of pocket for the eye doctor visits. I'll see if the place I go to will let me see the Opthamologist. I'm betting a Retinal Specialist will probably be a long drive and expensive. I'll see what kind of eye coverage I get when I get Medicare to see if seeing a Retinal Specialist would be covered.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 09:36:05 AM
Medicare should cover all "medical" and eye problems from SS is "medical" NOT routine eye care!  For example...I saw an MD for possible dry eye from SS and my insurance paid.  I saw an OD for a refraction for new glasses and my "routine eye care coverage" paid for that.  Two separate types of coverage.  You'll be fine once you start Medicare.  Jill
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 10:14:24 AM
Medicare should cover all "medical" and eye problems from SS is "medical" NOT routine eye care!  For example...I saw an MD for possible dry eye from SS and my insurance paid.  I saw an OD for a refraction for new glasses and my "routine eye care coverage" paid for that.  Two separate types of coverage.  You'll be fine once you start Medicare.  Jill

What coverage do you have for routine eye care? As I don't believe Medicare covers that.

Oh, another reason why I was hesitent to rely on my Optomitrist. As I had asked him about the Plaquenil. And about the possible eye problems with it. And I was wondering if he could check for toxicity as some eye docs had missed it. As Plaquenil is something I may be taking in the future. Then he mentioned pretty much there is no point in treating Sjogrens as you're eyes will get dryer as you get older whether you have Sjogren's or not.

Thanks
Title: Re: Sjogrens treatment side effects
Post by: anita on October 13, 2011, 01:11:50 PM
Jason,

I have Medicare (for the last 14 years) and all my ophthalmology appointments are "covered" by Medicare.  This includes all exams, doctor, etc.  Why are you having to wait for Medicare? 

I would say almost 3/4 of the members here take plaquenil and I only remember (but I forget sometimes) one person with an eye 'reaction' (not toxicity) to plaquenil.  Of course there are other side-effects (GI, etc) that others have experienced, but I don't think anyone has reported toxicity here.  I would think if it was as common as you seem to be reading about, then there would be people here who have confirmed cases.  Gold has provided some great info and others here as well. Your anxiety about the plaquenil may outweigh the benefits and effect your overall health.   It is very important to be 'comfortable' with your treatment.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 13, 2011, 01:17:39 PM
Jason,

I have Medicare (for the last 14 years) and all my ophthalmology appointments are "covered" by Medicare.  This includes all exams, doctor, etc.  Why are you having to wait for Medicare? 

I would say almost 3/4 of the members here take plaquenil and I only remember (but I forget sometimes) one person with an eye 'reaction' (not toxicity) to plaquenil.  Of course there are other side-effects (GI, etc) that others have experienced, but I don't think anyone has reported toxicity here.  I would think if it was as common as you seem to be reading about, then there would be people here who have confirmed cases.  Gold has provided some great info and others here as well. Your anxiety about the plaquenil may outweigh the benefits and effect your overall health.   It is very important to be 'comfortable' with your treatment.

I'll probably try it. A few months ago I had a bad bought of dry eye to where I woke up with them on fire. And they burned for a couple of weeks. And my eyes have been dryer sense. Then recently my mouth has gotten really dry to where I can't really sleep. I'm hoping if I get started on treatment soon, the recent worsening of the dryness will reverse.
Title: Re: Sjogrens treatment side effects
Post by: Meld256 on October 13, 2011, 02:00:57 PM
jason,

Back to the fact you are seeing an optometrist, not an opthamologist; 2 very different things.  The optometrists do not and cannot treat medical issues for the eyes. 

This is really shown by the fact you say the optometrist told you that there is no sense in treating dry eyes from Sjogren's.  They are not trained to give that kind of info! And as we know, that is just wrong.

If you decide to start on Plaquenil, it makes no sense to use it part of a week and skip part, in my humble opinion.

I hope you can see a doctor, a rheumy, a PCP with whom you can talk over your options and your concerns.  We can go on an on here about what your concerns are, and you can (and have the right to) question every suggestion, every article and everything written on the web.  Sometimes we just gotta make up our minds and go with it!  ;)
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 13, 2011, 02:52:31 PM
Ditto what Meld256 said......

gursie
Title: Re: Sjogrens treatment side effects
Post by: Carebear on October 13, 2011, 04:43:16 PM
Jason,

As every here has said, ophthalmologists are actually medical doctors where as optometrists are not.   Your rheumotologist should insist that you are under the care of an ophthalmologist if you are on Plaquenil , and he should be the one to refer you.  That's how it worked for me.

My ophthalmologist, who works in a teaching hospital, has never seen any patient in their eye clinic with damage from Plaquenil.  You really need to stop stressing about it.  Plaquenil is the safest, most effective drug we can take.
Title: Re: Sjogrens treatment side effects
Post by: Iris on October 13, 2011, 04:52:50 PM
I switched to Thera Tears Nutrition which has the Omega 3 but lots of Vit E and a fish oil/flaxeed combination. 

They are now saying that men taking supplemental vitamin E may be increasing their risk for prostate cancer by up to 17 percent..  But they also said The new finding comes on the heels of a study released Monday that found that dietary supplements -- including multivitamins, which often contain vitamin E -- are associated with worse health in older women.

They need to make up their minds if it's good for us or not..
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 13, 2011, 09:05:17 PM
No kidding Iris!  My Dad used to tell me when I was young that taking Vit E everyday was the best thing I could do for my health.....but I didn't take his advice.  Now with the moisture and mucus membrane issues with SS I would think Vit E would be great and great for healing cracks in skin, etc.  whether the vitamin is in or out of the capsule!  All I know is that I had to stop taking my cherished Krill oil because it started interfering with the acid content of my stomach plus I'm sure I've been a lot more nervous since my diagnosis.  So, with that said I tried the TheraTears Nutrition and I have no problem with digesting it and no fishy after taste so I figure this is better than no fish oil at all!  I thought the Vit E would just be an added bonus for my body :)  Everything we read and see on TV is so doom and gloom and going to kill us before we get a chance to sue the manufacturer and the doctor who prescribed the killer medication!!!!  If there are actual scientific reports out there stating that Vit E is bad for your health please refer me to them.  My focus has mostly been on Vit B complex, C and Calcium, D, Magnesium and Zinc.  E is a new one for me ;)   Thanks Iris for the new info! 
Title: Re: Sjogrens treatment side effects
Post by: irish on October 13, 2011, 09:53:00 PM
Jason, I don't know where you are getting your information, but the eye issues are exceedingly rare. Reason being, the plaquenil is being given to AI patients at a pretty low dose. The dosage schedule for malaria is many more mgm than is used for the AI diseases. The lower dose seldom causes much eye involvement.

This subject has been hashed over many times in the 6-7 years I have been on this site. There are many people here who see optholmologists who have said that they have never seen a patient who had problems with the plaquenil.

And, any of the literature I have read (and I have read a lot) says that with the regular eye exams the vision issues are caught early and when the medication is discontinued the eye issues resolve. I have a daughter-in-law who is one of 2 optometrists working with 6 optholmologists in a metro setting.

I started the plaquenil 3 weeks ago and will have an eye exam soon. I get yearly exams so I have a baseline already. She just told me that the plaquenil causes very few problems and they are reversible when caught early. These eye issues don't happen overnight. They come on slowly and are very likely dosage related as far as length of time the meds is taken. I am referring to people who may have eye issues. The length of time we take Plaquenil is of importance when a person has eye involvement. Especially if the person has taken the plaquenil without having the regular eye exams.

I don't understand your obsessive concern about the eye issues.  I guess I would be much more concerned about the severe eye issue(including blindness that can occur with the corneal issues. We have had more people on this board suffering from severe and debilitating eye issues than we have had people with eye issues from the plaquenil. It is your choice not to take the plaquenil. My biggest fear is that you are causing much anxiety in other people who are considering the plaquenil.

I also think that there are more people who have had to quit the plaquenil because of increased blood counts than because of eye issues. Irish ;D
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 14, 2011, 03:31:00 AM
I agree with Irish totally..... Also,we all dont want to have to take medications, but, sometimes we have to. We dont have many options, but, you may find one that really helps you feel better, and stops the progression of the disease as well. Everything is a gamble. You and your doc have to make the best decisions for you.

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 14, 2011, 05:32:33 AM
What type of blood issues is there with Plaquenil?

It sounds like most here haven't had eye problems with Plaquenil. Where I had gotten my information from was searching around Google reading other peoples posts on their eye problems with Plaquenil. And about how their eye doctors had missed the toxicity and told them to keep taking it even though they were having eye problems.

I guess this is the blog that really got me worried. As he was taking Plaquenil for AI and routinely saw eye doctors. And I believe this person is now almost blind cause the eye doctors all missed it until he went for a second opinion. By then the damage was done as it had been going on for years.

It's a good read:

http://judybland.blogspot.com/

I'll probably be willing to try Plaquenil since my dry eyes and mouth have recently gotten worse. That is if the doctor prescribes it. But it sounds like it is a first in line treatment.
Title: Re: Sjogrens treatment side effects
Post by: Carebear on October 14, 2011, 07:11:12 AM
Jason,

Be discerning with what you read on the internet.  Just because it's written, doesn't make it true.

Have you been already been prescribed Plaquenil?  If so, it's best you speak with your rheumotologist about your concerns.   
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 14, 2011, 07:47:36 AM
Jason,

Be discerning with what you read on the internet.  Just because it's written, doesn't make it true.

Have you been already been prescribed Plaquenil?  If so, it's best you speak with your rheumotologist about your concerns.

No I haven't been prescribed Plaquenil. The last two Rhymys didn't do much. One tried Prednisone for a few months. But I guess that is all he does. I'm going to see a new Rhmy in a few weeks. Though they mention about wanting to do a lip biopsy to confirm Sjogrens. As I have all the symptoms, but my bloodwork is good. But I don't really like the biopsy test and don't have money for it anyways. Looks like the test isn't real reliable and can leave permenent numb area is my understanding.

I guess I'll see if he'll treat and diagnose based on the symptoms. My Shirmers is 0/0. My ENT has mentioned about my real dry sinuses. I have dry lips and mouth plus all the joint pain, fatigue, muscle pain. Parts of my body go numb. And it's progressive. I also had shingles in my early twenties which isn't normal. I also have POTS syndrome. And hypogondysm. After the first symptoms started I got real bad cavities and bad breath at that time.

I'm a young male and should'nt have dry eyes. But I do. There is no medication that could be causing it. The symptoms add up to Sjogren's. I had always believed it was some type of autoimmune anyway.
Title: Re: Sjogrens treatment side effects
Post by: Carebear on October 14, 2011, 08:02:18 AM
Jason,

It sounds like you need to get all your specialists talking to each other to review your symptoms and test results.  That's how I finally got my diagnosis.  The important thing is to have one of them be your "quarterback", to be in charge of your treatment.

Who did your schirmer's test?  And what did he say caused zero tear production?  That's the doctor I would see again if I were you.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 14, 2011, 08:44:13 AM
Jason,
The Head of the University Ophthalmology Dept. paid me a visit yesterday....he's been on sabbaticle doing research in the Midwest and I was flattered that he stopped in my office upon his return.  He is a very wise, intelligent man who has seen some awfully sick people throughout his life.  He also has vitiligo which I believe is an AI. 

He shook some sense into me for sure!  He told me right out "Jill, don't become your disease!  You are no different than you were 5 days ago, 2 years ago or 20 years ago.  You are the same person we've known and loved.  Do what you have to do to feel better and take the medication you need to fight the disease but for gosh sake, don't become the disease!"  He said, "you are a tough cookie.  I've seen you and you're the toughest female I know.  Don't allow this to steal your life.  Go forward and live your life as you planned." 

He then reported to me about one of our 43 year old colleagues who has gone through his second round of chemo for lung cancer and yes, it's metastisized into his chest cavity and other areas.  He has two small kids and a wife and he can't have surgery so he's fighting with chemo treatments.

Then here's me sitting there feeling like damaged goods and scared about my future!  He gave me a big hug and I proceeded to my training with the medical students with a much heavier heart but also with a new outlook.  I will continue to replay his words in my mind as I go along this journey and I will keep close in mind those who cannot get out and work a full day as I do or those who are in much pain 24/7. 

Sometimes we need a little reminder or in my case a fire lit under my hinde quarters to wake up and see that this is our life.  We can't change it but we can try to make the best of it.  In the beginning I was letting fear get in my way but now I'm going to experience what I need to move forward and make my comments or judgements after my experiences whether good or bad.  I am trying to remember how I felt about myself prior to my diagnosis and live with that good feeling from now on.  Don't prevent yourself from getting better because of fear or rumors or negativity.  I am a work in progress but I will keep trying to go forward. :) 
Title: Re: Sjogrens treatment side effects
Post by: A66eyroad on October 14, 2011, 09:49:59 AM
Well said, Gold, well said.
Title: Re: Sjogrens treatment side effects
Post by: Meld256 on October 14, 2011, 10:03:00 AM
Thank you, gold,

The gentleman you spoke with is a wise, intelligent man.  He is so right, and we all need this reminder from time to time.  We are not our disease!  We are still the same people we were before our illness.

We can obsess, worry and fret and it won't change things. I suppose this is the "acceptance" phase.  But accepting doesn't mean we are giving up!  What we CAN do is take action to get the best care possible, treat ourselves with whatever meds and lifestyle changes we need to do, and as they say "go on with it!   ;)

Yes, it can be hard to do.  We each have our own struggles, whether we have mild symptoms or more severe ones.  Whether we are still working, young and caring for children, retired and taking care of ourselves and/or a spouse, we each have this journey in common. 

We cannot let fear, negativity and rumors stop us from learning how to live our best lives possible.  That just puts ourselves *in our own way*.   :D

We are all a work in progress, gold.  I'm just glad we can be on that journey here together.
Title: Re: Sjogrens treatment side effects
Post by: Narablueeyes on October 14, 2011, 10:08:39 AM
Jason,
The Head of the University Ophthalmology Dept. paid me a visit yesterday....he's been on sabbaticle doing research in the Midwest and I was flattered that he stopped in my office upon his return.  He is a very wise, intelligent man who has seen some awfully sick people throughout his life.  He also has vitiligo which I believe is an AI. 

He shook some sense into me for sure!  He told me right out "Jill, don't become your disease!  You are no different than you were 5 days ago, 2 years ago or 20 years ago.  You are the same person we've known and loved.  Do what you have to do to feel better and take the medication you need to fight the disease but for gosh sake, don't become the disease!"  He said, "you are a tough cookie.  I've seen you and you're the toughest female I know.  Don't allow this to steal your life.  Go forward and live your life as you planned." 

He then reported to me about one of our 43 year old colleagues who has gone through his second round of chemo for lung cancer and yes, it's metastisized into his chest cavity and other areas.  He has two small kids and a wife and he can't have surgery so he's fighting with chemo treatments.

Then here's me sitting there feeling like damaged goods and scared about my future!  He gave me a big hug and I proceeded to my training with the medical students with a much heavier heart but also with a new outlook.  I will continue to replay his words in my mind as I go along this journey and I will keep close in mind those who cannot get out and work a full day as I do or those who are in much pain 24/7. 

Sometimes we need a little reminder or in my case a fire lit under my hinde quarters to wake up and see that this is our life.  We can't change it but we can try to make the best of it.  In the beginning I was letting fear get in my way but now I'm going to experience what I need to move forward and make my comments or judgements after my experiences whether good or bad.  I am trying to remember how I felt about myself prior to my diagnosis and live with that good feeling from now on.  Don't prevent yourself from getting better because of fear or rumors or negativity.  I am a work in progress but I will keep trying to go forward. :)

I tell myself everyday that there's ALWAYS someone else worse off than me.  I am thankful I can still move, see, somewhat hear, and enjoy a diet dr. Pepper and a hug.  :-D
Title: Re: Sjogrens treatment side effects
Post by: irish on October 14, 2011, 10:24:07 AM
Jason, I have to tell you that I am 68 years old, a registered nurse who had to quit working at age 60 because of AI disease and a wife and mother of 3 boys (now men) who are all much older than you.

First of all you ned to quit doing all this research cause you are just driving yourself crazy. Did you know that about 80% of the medical stuff on the internet is incorrect, someones elses faulty opinion or copied info from one site to another---both of which are not always accurate.

There are always very few sites that are totally trustworthy. Also, these discussion forums are many times nothing but trouble. At my age, and with my past experience, I can pretty well weed out the "crazies" on these discussion boards. There are so many people who are giving incorrect info or  faulty reasons why they assume or think that they were "shafted" by the doctors. Many of these people have no common sense or real knowledge of what they speak.

As far as blood work goes with plaquenil, the docs check the blood counts and the liver function, etc. Did you know that if you are on a daily schedule of Ibuprofen the docs will do the same thing. You need to realize that you are reading all this info and blowing things way out of proportion.

Plaquenil is a very safe drug---this was told to me by my immunologist who is a very well known man in the research and immune disorder community. He does research on an international level and works with many of the IVIG manufacturers on research etc. I have been on the plaquenil for 3 weeks now and I am surprised at the small amount of issues I have experienced compared to all the stuff I have heard or read about. So many people blame every little ache and pain on a new med and it may have nothing to do with the new med.

Plaquenil is no more problem to take than many other drugs. The statin drugs for high cholesterol have many side effects as do many of the other drugs. Every drug has it's problem and as long as we make an informed decision and keep up with our testing as needed things are usually fine.

Every single medication we take has its side effects but they are given because the benefits outweigh the risks.

Also, the lip biopsy does not guarantee a permanent numbness in the lip. Only the people who have this issue will complain about it. Those who have no problem seldom say a word because they have not problems. AGain, you need to make sure that you have someone do the biopsy who does them on a steady basis. Most people at the university level have the experience.

I would have an ENT do them as I don't think that general surgeons would have as much experience with them. Ask the doctor himself how many he does and how he does them. I had one done in 2003 and it was done in the office. I sat on the table, he injected my lip with novacaine, came back in about 10 minutes and took a scapel and cut out the small amount of tissue needed, put in the 2-3 stitches and send me on my way.

My lip swelled up a lot and hurt a lot so I took tylenol several times a day for a few days and occasionally after that. I went to work the day after I had it done. It was hard to eat so I ate malts and soup. My stitches fell out about 5 days after the procedure and I continued to have the fat, sore lip but it eventually healed.

The thing you need to realize is that any time you injure your lip (or have surpery on the lip) you will have a very fat lip. They also can bleed a lot because there is a good blood supply to the lip. Usually they will drain goop when they are healing. In other words, unless it is a gross green, thick, continuous drainage with redness and possible chills, it is probably just the normal goop. Many times a warm, wet wash cloth to the lip will settles things down.

In other words, the lip biopsies will cause discomfort and it will last more than 2 weeks usually. Also, sometimes there is numbness for a while. Everyone is different and some people have continual numbness for some reason. You have to weigh the pros and cons. I had one ordered to be done by my rheumatologist and my ENT thought it was not necessary. I told him "do it" and he did and it was positive. A whole bunch of my doctors were shocked to hear that I really was sick!!

I would advise that you find other things to do besides cruising the internet and driving yourself crazy with all the bad information. I am not trying to be mean, I am just trying to put things in perspective for you. You do what you need to do to exist with this disease and you find something to do with your spare time that is productive. Do some voluteering at a nursing home or senior citizens center. Anytime you are exposed to others you will have a better outlook on life and find things that will occupy your mind besides being sick. Good luck to you. Irish ;D
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 14, 2011, 04:40:25 PM
I have difficulty taking care of myself. So, I wouldn't be much good at a nursing home. My body is difficult to move which is the worst problem. I can't do much, and I get sore real easily. I could pick up and move something and be sore for 3 days from that one thing. Plus my concentration and communication is bad. My ability to communicate has gotten worse over the years. Alot of people assumed I was on drugs or something. Haha.

I have permanent sore muscles on one side of my back that bothers me every day. Years ago I did a job repeatedly that strained by back. After a few months since they wouldn't move me to a different job. I went and saw the doctor and he had me do something else and said my back would heal up. Well, it healed up some, but it remained like a sore muscle ever since. So, I have to be real careful with what I do. I'm real afraid of getting in a bad car wreck, because I know the injurys won't completely heal.

One thing I've notice is when I get injured. Sometimes it doesn't completely heal. I've gotten cuts and healed up. But were still painfull if you pressed on the cut area that lasted months. So, I'm really not interested in the lip biopsy as I don't have the money for it anyways. And it isn't reliable. Some doctors out there don't even do the test. Some do the test, and still treat regardless of the results.

When I research stuff, I don't just look at one site or one post. I looked around as much as I can on hundreds of different websites and get a consensus of the facts. There are other boards just like this one with people talking about autoimmune illnesses and their problems with treatment, etc.

I'd much rather treat based on the symptoms. I wouldn't want to run the risk on not getting treated because of a false negative lip biopsy. That's been my achilles heel all these years. My bloodwork and things come back normal for the most part, so the doctors don't do anything. While I keep getting worse every year.

For example my Shirmers is 0/0. I'm a young male and I shouldn't have dry eyes. As they say that is something older people get. Or if you are taking medication that can be causing that. I also have the dry sinuses mouth and throat. Kinda feels funny when you start noticing a dry sensation on your lips. I think that's good enough to start treatment.

I did read in an opthamology magazine where they were talking about corneal erosion. And talked about dry eyes. The doctor who wrote it mentioned that young people with dry eyes almost always have an autoimmune illness. I'll bring a copy of that to when I see my Rhmy.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 14, 2011, 08:47:27 PM
I'll probably be willing to try the Plaquenil. But one thing I think people are missing is that alot here on the board seem to be older people and/or diagnosed or started treatment when they are older. I'm young, which means I'd be taking the medication for a lot longer than the people on this board would be taking it for. So, the risk increases the longer you are on it. If I was in my late 40's to 60's or something and started taking it. Then the risk would be alot less as they probably wouldn't be taking it as long compared to someone taking the medication since a young age. That's assuming the disease doesn't increase mortality as if so, then someone may not live as long if the disease starts when they're young.
Title: Re: Sjogrens treatment side effects
Post by: irish on October 14, 2011, 09:18:55 PM
Jason, There are a lot of boards and forums out there but they are not always giving the correct information. It is the name of the game.. Unfortuantely not all boards are followed by administrators as well as this one is.

Also, I was just on a site today where some people were talking about being on plaquenil and one lady has been on it for 23 years straight and has done very well. There were some others that were on it long periods of time but I can't remember the exact numbers.

One lady was on it when she was young and her eyes started to be affected so she was taken off of it. Many years later her lupus was much worse and she was taken off her cellcept for her pregnancy and the doctor put her back on the plaquenil. She said that she was older and smarter and she thought that she had improved the way she lived, ate, etc and felt that had a lot to do with tolerating it better. Plaquenil can be taken during pregnancy if needed. She stayed on it after she delivered and seems like it has been over 5 years now.
Everyone is different, but if a person doesn't try something that will help they will never know. Irish ;D
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 15, 2011, 03:00:04 AM
Jason, There are a lot of boards and forums out there but they are not always giving the correct information. It is the name of the game.. Unfortuantely not all boards are followed by administrators as well as this one is.

Also, I was just on a site today where some people were talking about being on plaquenil and one lady has been on it for 23 years straight and has done very well. There were some others that were on it long periods of time but I can't remember the exact numbers.

One lady was on it when she was young and her eyes started to be affected so she was taken off of it. Many years later her lupus was much worse and she was taken off her cellcept for her pregnancy and the doctor put her back on the plaquenil. She said that she was older and smarter and she thought that she had improved the way she lived, ate, etc and felt that had a lot to do with it.

Everyone is different, but if a person doesn't try something that will help they will never know. Irish ;D

Thanks. I'll probably try it if it gets prescribed and hope for the best. Though, I'd make sure to get competent eye exams from someone who knows what they are doing. Though, I don't know if an Opthamologist would be willing to see me since they say they only see cataract patients, etc. I might could look for one out of town. But going out of town all the time to see a doctor has gotten old.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 15, 2011, 04:00:19 AM
Jason, Im not sure where your getting your info about Opthamologist from?...even my healthy friends and family see them and they have no vision issues.  Here is a good explanation of what MOST opthamologist do.

http://www.ehow.com/about_5367917_ophthalmologist-do.html

If you decide to try plaquenil, recommend you find a good one, who you should only have to see around every 6 months.
You might have to travel farther, but sounds like this is a huge concern for you and would be worth it. I travel almost 2 hours
just to see my rheumy...because, she is very, very good. Hope this helps.

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 15, 2011, 04:07:02 AM
Jason, Im not sure where your getting your info about Opthamologist from?...even my healthy friends and family see them and they have no vision issues.  Here is a good explanation of what MOST opthamologist do.

http://www.ehow.com/about_5367917_ophthalmologist-do.html

If you decide to try plaquenil, recommend you find a good one, who you should only have to see around every 6 months.
You might have to travel farther, but sounds like this is a huge concern for you and would be worth it. I travel almost 2 hours
just to see my rheumy...because, she is very, very good. Hope this helps.

Gursie

In the past, I tried to setup my eye appointments with a local Opthalmologist. All the Opthalmologists offices in town told me that I couldn't see the Opthalmologist because they only see cataract patients, do surgeries, etc. They said the doc would refuse to see me for routine eye exam. So, I continued seeing an Optomatrist.

So, I'm assuming that hasn't changed. But if I start Plaquenil. I'll ask the place I get my eyes checked if I could see their Opthalmalogist for my eye exams.
Title: Re: Sjogrens treatment side effects
Post by: anita on October 15, 2011, 05:15:44 AM
I would contact the office again and just simply tell them that you have a 'medical' condition affecting your eyes and that it is NOT a routine eye test.  If they question you, then politely tell them this is beyond the scope of optometry and a vision test.  If they are still hesitant, then remind them that 'they' are not the doctor and ask them to just make you an appt to see him please.  I really don't think you'll have a problem though.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 15, 2011, 06:45:12 AM
I would contact the office again and just simply tell them that you have a 'medical' condition affecting your eyes and that it is NOT a routine eye test.  If they question you, then politely tell them this is beyond the scope of optometry and a vision test.  If they are still hesitant, then remind them that 'they' are not the doctor and ask them to just make you an appt to see him please.  I really don't think you'll have a problem though.

That's what I plan on doing. I wasn't comfortable with my Optomitrist when I asked him if he could detect Plaquenil problems when looking in the eye. He didn't say if he could. Just mentioned that once he see something, damage is done. Though, I know you can have build up in the eye that hasn't done damage yet. So, I guess he wouldn't be looking for that. Anyways, he said he would rely on the peripheral test. But I don't think he'd be using a machine. Probably just his fingers.
Title: Re: Sjogrens treatment side effects
Post by: Linda196 on October 15, 2011, 07:54:13 AM
When you ask about the optho, please make the differentiation between "routine eye examination", for example refraction checks for determining the need for vision correction; and "regular follow-up" including field of vision and macular visualization which is required for Plaquenil check up. What is routine for us, may not be what the optho's receptionist considers routine.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 15, 2011, 07:59:32 AM
When you ask about the optho, please make the differentiation between "routine eye examination", for example refraction checks for determining the need for vision correction; and "regular follow-up" including field of vision and macular visualization which is required for Plaquenil check up. What is routine for us, may not be what the optho's receptionist considers routine.

Thanks for the tip. I'll make sure to do that.
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 09:25:19 AM
I think the method of action of plaquenil can give us a great deal of insight into the disease process itself. For instance, the drug Humira was designed to target tumor necrosis factor.(TNF) This is what is stated on the Humira website. Their website says that TNF, (which is just a necessary normal part of the immune system) becomes elevated for some reason in autoimmune diseases such as RA. TNF is also involved in the pathogenesis of Sjogrens. The cells that trigger sore swollen glands release TNF. If you are unable to degrade it when necessary, this will lead to elevated levels. There is nothing wrong with TNF. The problem is, autoimmune sufferers can't degrade it when necessary. Knocking out a vital, necessary part of your immune system can lead to serious side effects, as is stated on the Humira website.

What is responsible in the body for degrading TNF? Pancreatic enzymes called proteases.

Plaquenil works partly by blocking the activation of toll-like receptors on plasmacytoid dendritic cells. These cells produce antigens to DNA-containing immune complexes. Here is a picture of one such DNA containing complex.

http://www.sciencedaily.com/releases/2010/05/100503161423.htm

As the last paragraph states in this article, lupus patients lack DNase 1. DNase 1 is found mostly in the pancreas where it is produced. It is a protease. It's job is to break down dietary proteins and DNA. If you lack pancreatic enzymes called proteases, you will not be able to degrade tumor necrosis factor, nor will you be able to properly break down dietary proteins and these improperly broken down proteins will end up in your bloodstream. This is what the immune system is targeting.

Yes, by taking plaquenil, you will stop the immune system from targeting these protein fragments and DNA and this will reduce many of the symptoms of inflammation associated with an immune response. But these improperly broken down proteins and DNA will still be present and will cause harm in other ways. The best thing ( in my opinion) is to restore the ability of your body to digest dietary proteins, so you won't have to worry about side effects from medications like Humira or plaquenil.

Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 15, 2011, 02:48:38 PM
If it were that simple Nat, wouldn't the docs be working on restoring our digestive processes?  Also, what if you have SS but you don't show an elevated TNF?  I believe there is a blood test for that, correct?  thanks, jill
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 03:26:56 PM
Here is some information that shows the connection to TNF and Sjogren's. In the second sentence it states, " The production of the proinflammatory cytokines tumor necrosis factor is elevated in exocrine glands of patients with Sjogren's."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2584989/

This information is not well known. I don't believe that elevated tumor necrosis factor is the only problem in Sjogren's, but each and every symptom in not only Sjogren's, but in all autoimmune disease can be traced directly back to these missing enzymes.As the previous information I posted stated, the NETs found in the bloodstream of lupus patients are a direct result of a missing protease. Additional studies show, when this enzyme is removed in mice, the mice get lupus. If there is a genetic defect in this enzyme, lupus is the result.  Since plaquenil is known to stop the immune response against these NETs, that would indicate they are present in other autoimmune diseases that respond to plaquenil.  There are also many other indications that Sjogren's patients are not able to digest dietary proteins.

Proteases break down dietary proteins into amino acids. Dietary proteins are also the ONLY source of vitamin B12. B12 cannot be metabolized without pancreatic enzymes. B12 and amino acids are necessary to produce both of the neurotransmitters that regulate the autonomic nervous system. The neurotransmitters are adrenaline and acetylcholine. (Acetylcholine is derived from choline. Choline is derived from B12 and folate.) Adrenaline is derived from dopamine. Dopamine is derived from tyrosine. Tyrosine is converted from phenylalanine. Phenylalanine is found in high protein foods. If you lacked these neurotrasmitters, you would not be able to regulate the autonomic nervous system which is what regulates the flow of saliva.

If you go through my past posts, I have posted a great deal more information on this.
Title: Re: Sjogrens treatment side effects
Post by: anita on October 15, 2011, 04:20:54 PM
You are correct, Jill...it's NOT that simple.  If it sounds too good to be true (or easy in this case), then it probably is.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 15, 2011, 08:27:38 PM
Nat, I know you posted a ton of links I have been trying to read through.....very informative but very hard to remember all the research and terminology at times.  I have an overall understanding of what you're talking about and what the links are saying but, don't ask me to explain it to someone else like you do!!!! :D   
When is your book coming out on Amazon?  Also, with the pancreas/digestion issues do you find that a lot of AI people end up with diabetes type 2?  I know we can acquire it from use of steroids but is it common result of AI disease?  thanks, jill 
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 09:47:24 PM
Hi Gold, Thanks for your kind response and inquiry. My book came out a few days ago on Amazon. It is called, Autoimmune The Cause and The Cure. As you can most likely tell,this is a topic I love to discuss, so I am glad you asked about the connection to type 2 diabetes. I believe all autoimmune diseases originate from a common source. That source is missing pancreatic enzymes called proteases. Proteases break down dietary proteins into amino acids. They are also necessary to release B12 from the proteins.  There is a great deal of evidence to connect type 2 diabetes to missing proteases.

First, insulin is made in the pancreas from amino acids. Amino acids come from the break down of dietary proteins. If even one amino acid is missing, you would not be able to make insulin.

In patients with type 2 diabetes, the B12 connection has been established by researchers at the prestigious Warwick Medical School in England. The University of Warwick researchers, led by Professor Paul Thornalley, have shown conclusively that diabetic patients are thiamine (B1) deficient in blood plasma. In a paper entitled, "High prevalence of low plasma thiamine concentration in diabetes liked to a marker of vascular disease," published in Diabetologia, the team found that thiamine concentration in blood plasma was decreased 75% in type 2 diabetic patients.

The paper states, "The researchers found that the decreased plasma thiamine concentration in clinical diabetes was not due to a deficiency of dietary input of thiamine. Rather, it was due to a PROFOUND increased rate of removal of thiamine from the blood into the urine." (Thornalley, 2007). If you are deficient in B12, you will not be able to absorb B1. It will be EXCRETED IN YOUR URINE.

One of the most common and troublesome complications of diabetes is diabetic autonomic neuropathy. In my previous post, I showed how the lack of amino acids and B12 would result in the lack of the 2 neurotransmitters, adrenaline and acetylcholine, to regulate the autonomic nervous system. In addition, in the study entitled, "Autonomic dysfunction and hemodynamics in vitamin B12 deficiency," researchers state, "The results suggest that vitamin B12 deficiency causes autonomic dysfunction with similar hemodynamic consequences and patterns of autonomic failure as seen in DIABETIC AUTONOMIC NEUROPATHY." (Beitzke, 2002)

There is a great deal more, so I will start a new post.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 15, 2011, 10:15:28 PM
Nat, are you Annesse or Kirsten listed as the authors?  or am I looking at the wrong book?  It sure got fabulous reviews if I have the correct book!  WOW! 
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 10:26:38 PM
Here is some more info on the connection to lack of proteases and type 2 diabetes.

Dietary proteins are broken down by proteases into amino acids and into peptides (short chains of amino acids). Your body would not be able to form normal peptides from improperly broken down proeins and missing amino acids. Researchers at National Jewish Health and the University of Colorado Anschutz Medical Campus have identified the precise peptide that they believe is a trigger for diabetes.The findings support "An emerging theory about the origins of autoimmunity," as stated in an article from ScienceDaily. Following is an excerpt from the article that discusses this discovery.

"Our findings contradict conventional wisdom, which suggests that insulin peptides that are well presented to the immune system trigger diabetes.'said John Kappler, Ph.D., Professor of Immunology at National Jewish Health.' We believe, however, that the peptide we identified triggers diabetes precisely because it is so poorly presented to the immune system.' These findings support a theory recently posited by Kappler, Eisenbarth, and Brian Stadinski, Ph.D., of Harvard Medical School. They believe that , 'Poorly presented peptides are more likely to cause diabetes and other autoimmune diseases. This is the third time that a specific peptide and its binding register have been associated with autoimmune disease,' said Kappler." These findings have a direct link to human disease." (National Jewish Health, 2010).

There is much more, so I will post more later tonight or tomorrow.
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 10:33:38 PM
No Gold, you got the right book. Kristin is my daughter. I am very thrilled about the reviews so far too. Be sure and go through Sjogren's World if you do decide to purchase it. I have so much more info on diabetes, but it is getting late, so it may have to wait until tomarrow. Thanks Again!
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 15, 2011, 10:36:56 PM
Are there any supplements that can be taken for that?
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 15, 2011, 11:20:50 PM
Hi Jason, No there really isn't. One of the hardest things to understand for most people is that you shouldn't take nutrients into your body you can't metabolize. For instance, if you are unable to digest dietary proteins, you will not be able to carry PROTEIN BOUND calcium. The calcium is then deposited in your joints and tissues. The abnormal deposit of calcium is one of the factors involved in arthritis and arthritic inflammation. Soft tissue, any kind of body tissue other than bones and teeth, is a target for depositing calcium. Wherever this happens, pathology occurs: in the joints,around inflamed areas (osteoarthritis), in the arteries (arteriosclerosis), in the kidneys (kidney stones, in the soft lenses of the eyes (cataracts, in the brain (stroke) and so on.

So, is the answer to take more calcium so your body has more to deposit in your soft tissues?
This is true of each nutrient that autoimmune sufferers have been found to be deficient in. The problem is in the ability of your body to metabolize these nutrients.  Studies show that taking amino acids will actually increase the symptoms of autoimmune disease. Since you lack the ability to break them down, they will be released into your bloodstream and your immune system will target them. (This is what is taking place in the NETs in the previous study on lupus)
I have posted studies to show that supplemental B12 can actually increase your cancer risk by 25%. Again, these missing enzymes are necessary to metabolize B12. Here is a quote of one study that states, " In vivo studies demonstrate that the pancreatic enzymes and the ionic environment in the upper gastrointestinal tract are ESSENTIAL determining factors for TRANSPORT and ABSORPTION OF vitamin B12 in man." The title of the study is, "Cobalamin Malabsorption Due to Nondegradation of R Proteins in the Human Intestine."

And finally, the specific enzyme that has been found lacking is deoxcyribonuclease or DNase 1. It is not available in a supplement. Thankfully, these missing enzymes can be found in specific foods. If you check my past posts, we have discussed some of these foods.
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 16, 2011, 12:06:24 AM
Do you have any recommendations on what bloodwork to get? I know they can check your blood for nutrition. But would there be other bloodwork so you know if you have problems absorbing certain nutrients?
Title: Re: Sjogrens treatment side effects
Post by: susanep on October 16, 2011, 01:54:18 AM
Jason I know it's hard, and you are wondering what to do in this terrible economy right now. I am facing it too.

Since getting my disability, I have been getting insurance help, but we got a notice that it may be cut off at the end of this month. So I may be in the same situation.

It is really hard isn't it? It does make it easier to want to take some vitamin type things ourselves, but not sure what helps.

I will say a prayer for you, and you say one for us too, ok?

susanep
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 16, 2011, 04:55:19 AM
Jason, I don't know where you are getting your information, but the eye issues are exceedingly rare. Reason being, the plaquenil is being given to AI patients at a pretty low dose. The dosage schedule for malaria is many more mgm than is used for the AI diseases. The lower dose seldom causes much eye involvement.

Where did you find the dosage for Malaria? I read that the dosage for Malaria prevention is 400mg weekly. For Malaria treatment, it says that 800mg for the first dose, 400mg for the second dose six to eight hours later, then followed by 400 mg for the next two days.

It doesn't sound like prevention or treatment for Malaria is usuing high dosages for long periods of time. The highest dose would be for treatment 1200mg, but that's just for one day.

Here's where I read it at:

http://antibiotics.emedtv.com/plaquenil/plaquenil-dosage-p2.html

It's the same thing I had read on other sites as well.
Title: Re: Sjogrens treatment side effects
Post by: anita on October 16, 2011, 05:32:32 AM
Jason,

I found the same info you posted about Malaria dosing.  However, I also found this on Wikipedia for Plaquenil.  Hopes it helps put it into perspective.  The risk IS very low, but you will just have to decide for yourself.  Like I said before, your anxiety over this may cause you more problems for your health in general, then the plaquenil itself to your eyes or anything else. 

"One of the most serious side effects is a toxicity in the eye.[11]  (generally with chronic use) The daily safe maximum dose for eye toxicity can be computed from one's height and weight using this calculator. It should be noted that macular toxicity is related to the total cumulative dose rather than the daily dose. People taking 400mg of hydroxychloroquine or less per day generally have a negligible risk of macular toxicity, whereas the risk begins to go up when a person takes the medication over 5 years or has a cumulative dose of more than 1000 grams."

And as far as supplements, there are far more studies about positive results of B12 supplementation (for peripheral neuropathy and many other nerve related problems), so it is obvious most do metabolize it and get benefit from supplementation.  B12 can and should be checked by lab work.  NOT all patients with AI disease are deficient or unable to metabolize.

Title: Re: Sjogrens treatment side effects
Post by: gurs on October 16, 2011, 07:19:26 AM
On the absorbing the B12 issue,  I take B12 caspules  and have high levels of B12, and was told by my gastro Doc that I tested negative for
pernicous anemia when I had a colonoscopy, however, my hormone doc said that this didnt matter, and I still need B12 shots?

My stomach is so bad with this Gastroparesis, I cant seem to absorb anything? My vitmains and some supplements I now
get in powdered form hoping it helps somewhat?

Nat, any advice on this?

Gursie
Title: Re: Sjogrens treatment side effects
Post by: jasonsmith on October 16, 2011, 07:30:21 AM
I think my B12 was good when the test was done. Though, there is a local place who does B12 shots.

I'll probably try the Plaquenil. Not sure how long I'll be able to take it as I have bad chronic diarrhea. So, it may not be tolerable.

I know people like getting on a medication that works and staying on it. Since the meds for this illness has long term risks. I still think it's something to look into with regards to rotating on different meds so you can reduce the chance of long term problems from staying on the same med year after year.

I've read of some who have to take Prednisone for whatever reason where they taper off of it for a while to help reduce long term problems. If I was able to take Plaquenil for years, I'd try to rotate over to something else for a while.
Title: Re: Sjogrens treatment side effects
Post by: Narablueeyes on October 16, 2011, 07:51:08 AM
On the absorbing the B12 issue,  I take B12 caspules  and have high levels of B12, and was told by my gastro Doc that I tested negative for
pernicous anemia when I had a colonoscopy, however, my hormone doc said that this didnt matter, and I still need B12 shots?

My stomach is so bad with this Gastroparesis, I cant seem to absorb anything? My vitmains and some supplements I now
get in powdered form hoping it helps somewhat?

Nat, any advice on this?

Gursie

I take all my vitamins in liquid form.  My bp meds seem to be working in pill form as well as my pain and anxiety meds.  So WHY not my vitamins in pill or caplet form??
Title: Re: Sjogrens treatment side effects
Post by: Joe S. on October 16, 2011, 08:11:00 AM
Jason, I know that you are searching for a cure or solution. I have found many supplements that help. I am not able to plaq or MTX that most on this forum take. I have had to find other management methods.

We have problems with sun light so I started taking vitamin D. After doing some research I found that D3 was more beneficial. My personal experience has shown that D3 is more helpful to me.

If you have nerve problems B12 is a good supplement.

When I was at a pain clinic in 1986 they recommended a good multivitamin stress tab and 500 mg vitamin C each day because of the stress pain puts on our bodies. The pain clinic also recommended 6-8 oz of carrot juice every day to help with endorphin creation which will reduce pain levels.

There are many other tips, techniques and supplements that can help us. Most are cataloged in the discussions on this forum.

R-Lipoic Acid and Acetyl L Carnitine would not be helpful if there was not a problem with our mitochondrial DNA. These two seem to help with brain fog. PQQ may be a future option to reverse mitochondria DNA damage and restore regeneration capabilities.

What we can not cure we have to manage. What we can not manage we have to survive until we can manage.
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 16, 2011, 11:20:27 AM
I have posted many studies to show the connection to the inability to metabolize B12 and autoimmune disease. Here are a few of the titles.

"Multiple Sclerosis Associated with Vitamin B12 Deficiency"
In this study it states," A vitamin B12 BINDING and or TRANSPORT is suspected."

"Vitamin B12 Metabolism in Multiple Sclerosis"
In this study it states, "There is a significant association between MS and disturbed vitamin B12 METABOLISM. "

"Sjogren's Syndrome Associated with Vitamin B12 Deficiency"

"Vitamin B12 Deficiency Common in Primary Hypothyroidism"

The problem is in the binding and the transport of B12. The previous study I posted showed that pancreatic enzymes are "ESSENTIAL determining factors for the TRANSPORT AND ABSORPTION of B12 in man."
A high blood level of B12 gotten through supplementation does not mean you have gotten B12 into your cells. If you lack pancreatic enzymes and the proper acidic environment in the upper gastrointestinal tract, you will be unable to absorb B12 into your cells. That is why the studies point to the 'METABOLISM' of B12.

When the University of Warwick researchers (my previous post) found that diabetic patients had a 76% reduced level of B1 in their blood plasma they made this announcement to the world's diabetics. The result was diabetics around the world began to supplement with B1. In a short period of time, world wide press releases had to be issued to tell them to stop. They were unable to properly metabolize B1, because they lacked B12, and it was causing kidney failure. I have one of these press releases from the LA Times that I will find and post. So, even though they were grossly deficient in B1, taking it in supplement form only caused further damage.

Jason, some of the nutrients autoimmune sufferers have been found deficient in are B1 ( as was seen in diabetics) B12 of course. Low iron and low Vitamin D.
If you are unable to carry blood borne protein bound calcium ( If you lack pancreatic enzymes you would not be able to digest proteins and you would not be able to carry calcium) you would not be able to METABOLIZE vitamin D. Protein bound calcium is necessary for the proper metabolism of vitamin D. As the following information states, " low levels of vitamin D in patients with autoimmune disease may be a RESULT rather than a cause of disease and that supplementing with vitamin D may actually EXACERBATE autoimmune disease." This just goes back to not taking nutrients you are unable to metabolize. An autoimmune sufferer has no ability to bind or transport vitamin D to its proper destination. Taking it in supplement form when you are unable to transport it can lead to other diseases like Sarcoidosis. It will just be deposited places you don't want it, just like calcium if it lacks it's binder, which is protein.
 
http://www.sciencedaily.com/releases/2009/04/090408164415.htm


Title: Re: Sjogrens treatment side effects
Post by: Nat on October 16, 2011, 11:56:34 AM
Here is some info on the connection to lack of iron and proteases. The protease TMPRSS6 is an essential component of a pathway that  detects iron deficiency permitting dietary iron absorption. The researchers describe this as "a novel and exciting finding."

http://www.sciencedaily.com/releases/2009/04/090408164415.htm

A  study just completed and published in the Archives of Internal Medicine found that taking iron supplements increased death risk by 3.9 percent. This was replicated in separate short-term analyses that lasted 4 years and 10 years. You can access some more information on this from Bloomberg in an article entitled, "Vitamins Tied to Higher Death Rates in Older Women in Study."

Taking more iron in supplement form if you are unable to properly metabolize it would lead to additional complications. By eating foods that restore your pancreatic enzymes, you would be able to properly metabolize all of the nutrients found deficent in autoimmune disease.
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 16, 2011, 11:59:23 AM
Here is the correct study.

http://ndt.oxfordjournals.org/content/23/10/3063.full
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 16, 2011, 12:44:32 PM
Nat,

So what about B12 injections? would they help on this?

thanks


Gursie
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 16, 2011, 01:15:13 PM
Hi Gursie, sorry no go.

Putting B12 into your bloodstream without the ability to bind or transport it into your cells would not only not benefit you, a recent study from Norway shows it could cause you a great deal of harm.

Here is the study.  http://jama.ama-assn.org/content/302/19/2119.abstract?etoc

The study was a double-blind, placebo-controlled, randomized clinical trial in which nearly 7,000 adults took just the amount of folic acid and B12 you would find in maybe a bowl of fortified cereal and a multivitamin. This type of study is considered the "gold standard" of research designs. The study participants were followed for a median of six and a half years (39 months of active study participation plus 38 months of post-study observation).

The study showed those who took these vitamins had:

21% higher risk of being diagnosed with cancer (any type)
38% higher risk of dying of cancer (any type)
18% higher risk of dying of any cause

Since B12 is only one component of autoimmune disease, it would be best (in my opinion) to simply address the problem at it's source.
Title: Re: Sjogrens treatment side effects
Post by: anita on October 16, 2011, 01:42:23 PM
Sjogren's may be associated with B12 deficiency...so is lymphoma, yet very few actually have it.  Just because something is 'associated' with a disease doesn't mean all (or even the majority) of patients have it.  This forum is almost all people with Sjogren's, yet very few have reported a documented B12 deficiency.  It would be interesting to take a poll and see how many actually have a B12 deficiency.  And for those that do, whether supplements (even shots) didn't improve serum levels (meaning they cannot metabolize).  I think the numbers would be low.  I know for certain they would not be as absolute as you relay in your posts.

Gursie,

I too have gastroparesis and know it contributes to problems with absorption.  If your B12 numbers are high, why are you considering supplements?  Do you have other neuro problems?  I do believe what doctors think are 'normal' could be much higher.  I have read that a level of 400 should be the minimum for those with neuro problems. 
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 16, 2011, 02:21:10 PM
According to a large study done at Tufts University, nearly 40% of the American population has B12 levels low enough to cause neurological damage.In addition, they tested the participants at a very low level- 258 pg/mL.  Here is some more information on the study.

"Recent research indicates that B12 deficiency is far more widespread than formerly believed. A large study in the US found that 39 percent had low values.[17] This study at Tufts University used the B12 concentration 258 pmol/l (= 350 pg/liter) as a criterion of "low level". However, recent research has found that B12 deficiency may occur at a much higher B12 concentration (500-600 pg/l). On this basis Mitsuyama and Kogoh [18]. proposed 550 pg/l, and Tiggelen et al [19] proposed 600 pg/l. Against this background, there are reasons to believe that B12 deficiency is present in a far greater proportion of the population than 39% as reported by Tufts University."

One surprising fact from the Tufts University study was that the participants in the study were eating foods rich in vitamin B12, but their bodies were not absorbing the vitamin.

I think there are two reasons people may be unaware they are deficient in B12. American medical opinion defines blood levels lower than 200 pg/mL as an indication of deficiency. This number is based on the most severe manifestation of a deficiency, which is pernicious anemia. (That is like having your engine light come on just as your engine blows up.) Physicians in Japan and other countries consider blood levels of 500-1300 pg/mL to be the normal range. If you are in the normal range in the U.S., you have a severe deficiency-enough to cause pernicious anemia.

Of critical note; 500-600 pg/mL is the level at which memory loss, lethargy and dementia can occur.

The second reason is taking supplements may raise your serum (blood level) but not your cellular level, which is what is important. 

Title: Re: Sjogrens treatment side effects
Post by: anita on October 16, 2011, 05:59:16 PM
I'd be interested in seeing the study that confirms how they can tell a 500 pg/l level caused memory loss, lethargy and/or dementia (and that it was not something else that caused these conditions in their study patients). 

I agree (and stated to gursie in a previous post on this thread) that B12 reference ranges in the US are low...particularly in those with neuro problems. 

People with neuro problems who increase their serum level through supplementation can often see improvement, which leads me to believe that the cellular level has increased as well.
Title: Re: Sjogrens treatment side effects
Post by: gurs on October 17, 2011, 03:32:37 AM
Oh, I take (2) 500mg of B12 capsules daily, and my levels were testing around 700-1000. I have severe neuro issues..All the MS type issues.
Alot of my neuro issues started after my hysterectomy though, as I know my hormones play a large part in this and have alot to do with my Sjogrens/lupus flaring so bad.

So, what can we do then to get the B12 into our cells then? im confused?

Gursie
Title: Re: Sjogrens treatment side effects
Post by: anita on October 17, 2011, 04:37:07 AM
You might be fine at the cellular level.  That's just it Gursie, it's NOT always B12 that's responsible.  You can have your homocysteine and MMA (Methylmalonic Acid) checked.  If these are high, then 'some' question whether you might still be B12 deficient at the cellular level. 

My B12 is about 500 now and both my MMA and homocysteine are well within normal limits so I am NOT B12 deficient (serum or cellular), yet I have severe neuro problems (both peripheral and autonomic).  MANY neuro problems are from other causes.  I have increased signal & bilateral enlargement of the DRG (dorsal root ganglia) found through a brand new MRI protocol indicating that the Sjogren's has attacked the spinal cord itself (which my doctor at Johns Hopkins says they have known for years it does, but confirming while still alive has been difficult---used to be only seen post mortem, until now).

B12 IS known to be a factor in some with AI diseases, and it should be checked and increased (just as you are trying), since it can help reduce many neuro symptoms, but other sources of neuro problems should be considered...compression, diabetes, Sjogren's, etc. 
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 17, 2011, 09:58:04 AM
Hi Gursie,

The way to correct this is through diet in my opinion. Since the Tufts University study found that 40% of Americans have levels low enough to cause neurological damage, there is obviously something going on. They also found that Americans were eating foods that contain B12, but were not absorbing the vitamin. (This points to missing pancreatic enzymes). Also, since not only Sjogren's, but all of the associated diseases, such as lupus, fibromyalgia, chronic fatigue syndrome, MS, heart disease and vascular disease of all types, type 2 diabetes, MS and hypothyroidism have a definitive link to lack of B12, it would be wise to pay attention to why this is the case.

I will give you an example of what I mean by a associated diseases having a definitive link. According to a study entitled: Anemia is Hypothyroidism, " Pernicious anemia occurs 20 times more frequently in patients with hypothyroidism than generally."  Pernicious anemia is CAUSED by a B12 deficiency. Also the study entitled: "Vitamin B12 Deficiency Common in Primary Hypothyroidism" found that approximately 40% of patients with hypothyroidism had a B12 deficiency. While the deficiency found in this study is remarkable, this number likely would have been much higher if a more appropriate set of criteria had been used. They used an extremely low level to determine a deficiency-133 pg/mL.

The lack of B12 in autoimmune diseases is an important clue that can lead us to the source of these diseases itself and I believe that it has. As necessary and vital as it is that we restore our B12, it is important that we not lose sight that it is just a part of the overall disease process. We are sick because we lack pancreatic enzymes to break down dietary proteins. Once we restore this ability, we will be able to release B12 and properly absorb it into our cells. We will also be able to release amino acids that are responsible for making our hormones and neurotransmitters. We will then be able to make normal peptides and undigested bits of DNA won't end up in our bloodstreams and illicit an immune response.

Title: Re: Sjogrens treatment side effects
Post by: gurs on October 17, 2011, 10:12:03 AM
Thanks Nat for all this info....

What dietary changes are you talking about then?



Gursie
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 17, 2011, 11:54:13 AM
Gursie, you need to focus on foods that contain enormous amounts of enzymes. Eating just vegetables would not be enough. A carrot for instance has enzymes, but it has just enough to digest itself. It doesn't take enzymes from your pancreas in order to digest the carrot and that is a good thing, but it doesn't restore missing pancreatic enzymes. Some foods that do contain extra enzymes are foods like raw fermented (organic) sauerkraut. You will also need to heal your GI tract and replenish beneficial bacteria. (Again, this should be done through diet). Eating pasteurized yogurt, for instance, will not replenish lost beneficial bacteria. A healthy gut should contain thousands of species of beneficial bacteria. How many strains does pasteurized yogurt contain? The pasteurization process killed off all of the original bacteria. The few strains that are present were added back in. They will not restore your gut to its original condition.

You will also need to stop doing things that harm enzymes and bacteria. Fluoride, for instance, is a potent enzyme toxin. That is why the label on the average commercial toothpaste says to call a poison control center if you swallow just the amount used in one brushing. The very dictionary definition of a poison is that it KILLS ENZYMES.

You can also go back through my past posts for some more diet advice. Also, a support group called "Curing Autoimmune and Mimics" has been started that focuses on the restoration of these pancreatic enzymes through diet.(you can just type the group name into yahoo to find it) I didn't start the group and I don't know the people that did, but my daughter does post on the group site. Many of the members are recovering just from changing their diets and being aware of the many things that can destroy enzymes and beneficial bacteria in our modern world. This is not a journey you will regret taking. It is like we had the "ruby slippers" on all along.
Title: Re: Sjogrens treatment side effects
Post by: gold55 on October 18, 2011, 06:54:32 AM
Anita,
Are you saying that the terrible arthritis and severe spinal stenosis that was found in my back six years ago is due to the Sjogrens moreso than heredity?  The stenosis has caused much weird pain in my legs and feet .... I should say I blamed the stenosis prior to knowing that I had SJS.  thanks
Title: Re: Sjogrens treatment side effects
Post by: anita on October 18, 2011, 09:09:30 AM
Gold,

In short, no.  What I have is ganglionitis (also called neuronopathy) due to Sjogren's.  It is not causing severe arthritis or stenosis, but actually attacking the ganglia itself on the spinal cord.  This inflammation (from the Sjogren's) damages the nerves...in most cases permanently.  It has also attacked the autonomic ganglia, which is responsible for my problems with gastroparesis, heart rate & BP, cardiac vasospasms...and the list goes on.   I was addressing the fact that neuropathy can have many other causes...not just B12 deficiency.  Yet B12 does help with nerve function so moderate to high levels are encouraged for those with neuro problems.

The stenosis, is likely causing your PN type symptoms.




 
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 18, 2011, 10:33:15 AM
Here is some additional information of how lack of B12 can cause both stenosis and spinal cord degeneration. Homocysteine rises in direct proportion to lack of B12. In fact, one of the most accurate tests for a B12 deficiency is elevated levels of homocysteine.

http://vmj.sagepub.com/content/6/3/163.refs

Here is some information from the National Institutes of Health on Subacute Combined Degeneration of the Spinal Cord.

"Subacute Combined Degeneration of the spinal cord is a disorder that involves weakness, abnormal sensations, mental problems, and vision difficulties. Subacute combined degeneration primarily affects the spinal cord, but it can also damage the brain, the nerves of the eye, and the peripheral (body nerves).At first, the disease damages the covering of the nerves (the myelin sheath). It later affects the entire nerve cell.

"Symptoms:These symptoms slowly get worse and are usually felt on both sides of the body. Abnormal sensations(tingling and numbness), weakness of the legs, arms, middle of the body, or other nerves."

"Other symptoms include:

Clumsiness, stiff, or awkward movements
Unsteady gait and loss of balance
Change in mental state such as memory problems, irritability, apathy, confusion, or dementia
Decreased vision
Depression
Sleepiness
Speech impairment (possible)"

"Causes: Subacute combined degeneration of the spinal cord is CAUSED by a vitamin B12 deficiency."
Title: Re: Sjogrens treatment side effects
Post by: anita on October 18, 2011, 11:27:27 AM
The article is for homocysteine related carotid artery stenosis, not spinal stenosis that Gold was talking about.  Elevated Homocysteine (not low B12 in this particular case) is known to increase clotting factors, so the article is on track for this completely other condition.
Title: Re: Sjogrens treatment side effects
Post by: Nat on October 18, 2011, 12:43:31 PM
An elevated level of homocysteine is the strongest indicator of a B12 deficiency. That is why the most accurate test for a B12 deficiency is elevated levels of homocysteine. B12 is a co-factor to methionine synthase as the following information states. Without B12, you would not be able to recycle homocysteine and that is why it becomes elevated. As I stated, homocysteine rises in DIRECT PROPORTION to a lack of B12.  The information also states homocysteine is related to "progressive arterial stenosis".

Homocysteine destroys the lining of the blood vessel walls from the smallest capillary to the largest blood vessels. I posted the study to show that it is linked to arterial stenois. It can cause stenosis in every blood vessel in your body, not just the carotid artery. I think the point I was trying to make is that spinal cord degeneration and arterial stenois can be definitively linked to lack of B12 and I believe the information from the NIH and the other information I posted establishes that. I agree with the NIH, subacute combined degeneration of the spinal cord is CAUSED by a B12 deficiency. The role homocysteine plays in  arterial stenois is also clear. Is it the only cause? I am not sure, but lack of B12 which leads directly to elevated levels of homocysteine is one cause for sure.

http://www.touchcardiology.com/articles/homocysteine-new-marker-disease-risk-an-overview

Title: Re: Sjogrens treatment side effects
Post by: anita on October 18, 2011, 01:38:11 PM
She asked about stenosis relating to her arthritis (which is one of the most common causes of spinal stenosis)...not vascular.

Sure, SCD is caused by low B12...and the treatment is supplementation of B12.  I didn't dispute it.  However, SCD and arthritis induced spinal stenosis are once again, two different conditions.

Of course, high homocysteine and MMA are good indicators of low B12.  And low B12 certainly can cause neuro problems.  Didn't dispute that either and have even mentioned it myself.   However, there are many other conditions causing neuropathy, stenosis (vascular or otherwise), AI disease, etc.

You know, this thread was about treatment side effects  (ie, Plaquenil).  I think we've covered everything and then some.  I think it's best to close the topic and move on to something other then B12.
Title: Re: Sjogrens treatment side effects
Post by: Meld256 on October 18, 2011, 02:44:26 PM
Anita,

You have a good thought regarding this thread seeming to go in different directions.  Perhaps a new thread could be begun in regard to B12 and related conditions. 

Take care,
Melinda  ;)
Title: Re: Sjogrens treatment side effects
Post by: cargillwitch on February 01, 2012, 12:05:48 PM
wow this was a great conversation!! I have tried to see if a b12 dedicated stream was started and can't find it. This was incredibly dense but exciting information.I think Nat's ideas about pancreatic enzyme deficiency  causing multiple vitamin and mineral problems related to autoimmune response  is on the cutting edge! Anyone else here have issues with b12?
Title: Re: Sjogrens treatment side effects
Post by: jazzlover on February 01, 2012, 04:17:45 PM
Check the thread on turmeric.
Title: Re: Sjogrens treatment side effects
Post by: soycoffee on February 01, 2012, 05:02:53 PM
Hi Gursie, sorry no go.

Putting B12 into your bloodstream without the ability to bind or transport it into your cells would not only not benefit you, a recent study from Norway shows it could cause you a great deal of harm.

Here is the study.  http://jama.ama-assn.org/content/302/19/2119.abstract?etoc

The study was a double-blind, placebo-controlled, randomized clinical trial in which nearly 7,000 adults took just the amount of folic acid and B12 you would find in maybe a bowl of fortified cereal and a multivitamin. This type of study is considered the "gold standard" of research designs. The study participants were followed for a median of six and a half years (39 months of active study participation plus 38 months of post-study observation).

The study showed those who took these vitamins had:

21% higher risk of being diagnosed with cancer (any type)
38% higher risk of dying of cancer (any type)
18% higher risk of dying of any cause

Since B12 is only one component of autoimmune disease, it would be best (in my opinion) to simply address the problem at it's source.

This is the so-called Norbit study, I believe. I have reviewed it, and find that the statistical analysis is riddled with Type 1 errors -- finding results significant when they are not.

The government of Norway funded the study. They have a dog in the game -- they do not mandate that cereal be fortified with folate. If the study shows (it didn't) that folate "caused cancer" (again, it didn't), then the government would not have evidence to show the United Nations why it should not join other countries in mandating the addition of folate to the grains that are exported, for the manufacture of cereals.

There are many many many studies that find the reverse of the Norbit study, and endorse the addition of folate to grains used in bread and cereal.

One of the positive effects of Vitamin B-12 is found even in the Norbit study: that it lowers homocysteine, a substance that is highly correlated (r=~.9%, in one study) with each of the components of cholesterol. Normal range of homocysteine is no higher than 11, with a value of 7 the desired level. My intake of methyl B-12 has lowered my homocysteine from a value in the 20s, to 8, at the last measurement.

For more about homocysteine that synthesizes a number of studies, rather than quoting the headline-grabbers out of context, can be found at the following URL:  http://www.lef.org/protocols/heart_circulatory/homocysteine_reduction_01.htm

Please move this to any B-12 thread that gets established.

Thank you,
Soycoffee