Author Topic: Sjogrens treatment side effects  (Read 33918 times)

Joe S.

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Re: Sjogrens treatment side effects
« Reply #15 on: October 02, 2011, 04:26:15 PM »
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jasonsmith

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Re: Sjogrens treatment side effects
« Reply #16 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.

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #17 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.

Meld256

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Re: Sjogrens treatment side effects
« Reply #18 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

stephL

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Re: Sjogrens treatment side effects
« Reply #19 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!
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Carebear

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Re: Sjogrens treatment side effects
« Reply #20 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.
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jasonsmith

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Re: Sjogrens treatment side effects
« Reply #21 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?

stephL

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Re: Sjogrens treatment side effects
« Reply #22 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/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.
« Last Edit: October 02, 2011, 10:15:00 PM by stephL »
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jasonsmith

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Re: Sjogrens treatment side effects
« Reply #23 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/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?

stephL

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Re: Sjogrens treatment side effects
« Reply #24 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.
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #25 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.

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #26 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.

stephL

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Re: Sjogrens treatment side effects
« Reply #27 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.

"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

jasonsmith

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Re: Sjogrens treatment side effects
« Reply #28 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.

stephL

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Re: Sjogrens treatment side effects
« Reply #29 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?

"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)