Author Topic: Sjogrens treatment side effects  (Read 30977 times)

Jellyb

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Re: Sjogrens treatment side effects
« Reply #30 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.

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #31 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.

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #32 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.

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #33 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.

Jellyb

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Re: Sjogrens treatment side effects
« Reply #34 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.

gurs

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Re: Sjogrens treatment side effects
« Reply #35 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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #36 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.

gurs

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Re: Sjogrens treatment side effects
« Reply #37 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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #38 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.

gurs

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Re: Sjogrens treatment side effects
« Reply #39 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
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
Prednisone & medrol , plaquenil, diflucan, bio-estrogen creams,many supplements

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #40 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.

gold55

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Re: Sjogrens treatment side effects
« Reply #41 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
« Last Edit: October 13, 2011, 07:57:06 AM by gold55 »
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #42 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.

gold55

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Re: Sjogrens treatment side effects
« Reply #43 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!
Dx#1:  dx changed to Sicca Syndrome + UCTD (how wonderful)
Dx#2:  Osteoarthritis and high cholesterol
Meds:  my golden retrievers, my doodle, otc tylenol, ibuprofen, mobic, vitamins, omegas, oral pilocarpine, liguid chondroiten/glucosamine with

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #44 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.