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Old 03-09-2015, 03:27 PM #1
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Default Plaquenil causes and treats neuropathy?

Went to see my dr. today and she wants me to go for a lip biopsy for sjogrens. She says if it is positive wants to start me on plaquenil. Isn't that the very drug that has put people into this forum in the first place? I am so confused. First of all I haven't had the biopsy done yet, but my SFN and autonomic tests show nerve damage so I am terrified to take something that could further damage it. I do want to figure out how to stop the progression though.
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Old 03-09-2015, 03:48 PM #2
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Yes, it is a problem. Many things in medicine treat and cause illness.

The issue was probably clouded all along until the other quinolones were shown to cause nerve damage. Before that
doctors probably assumed that the nerve issues were due to the lupus in those patients. Plaquenil was never really a popular treatment.

It does cause damage to the nerves in the retina for some people too...this is probably an effect that was just very noticeable at first and the other nerve damage was less visible.
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Old 03-09-2015, 03:58 PM #3
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My understanding about Plaquenil is the doses taken for autoimmune disease is far less then that for Malaria, and even then the incident of neuropathy (with malaria dosing) is very low. I do know that eye damage from Plaquenil is extremely rare and most ophthalmologists tell me that they will never see a case...but they still do bi-annual checks for any early signs of damage...just in case.

If you start taking this, you will need a baseline eye exam and routine visits to an ophthalmologist for monitoring...but again, eye damage is very rare.

Honestly, I have not seen anyone on this forum with neuropathy from Plaquenil.
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Old 03-09-2015, 05:00 PM #4
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We have had at least 2 people here who developed body wide PN from Plaquenil and had to stop it.

This is one:
http://neurotalk.psychcentral.com/post884215-25.html

Here is a link explaining that it is more common that thought to cause eye damage:
http://webeye.ophth.uiowa.edu/eyefor...l-toxicity.htm
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Old 03-09-2015, 10:26 PM #5
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I know it does happen (eye damage) but it is rare. And this even states that other factors increase, the already rare, risk...liver/kidney disease and previous retinal disease.

I wasn't aware IdiopathicPN member was confirmed to have Plaquenil induced neuropathy. She only took it for 4 months and I don't know how it could be concluded that this was the cause. Of course it's possible, but how would she know, taking it such a short period of time? It takes almost 90 days just to build up in the system...longer for therapeutic results. That would be a extremely rare case...even according to the articles description.

There is a ton of things out there that can cause neuropathy...hundreds. How would they even confirm a toxic cause?
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Old 03-09-2015, 11:40 PM #6
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Healthgirl,,

Another thing I should say. The Plaquenil is used to treat the Sjogren's, not directly treat the neuropathy. If she feels the neuropathy is caused by the Sjogren's, then I guess she feels treating the underlining cause will help the SFN. It's actually not very effective in this manner. If your main symptoms are neuropathy related, then stick with something that is KNOWN to help immune mediated SFN, like IVIG.

Plaquenil is primarily used to help with some of the symptoms of Sjogren's...like reduce fatigue, and joint pain. It is also thought it help slow progression (but not well documented for this). It is not expected to halt the disease process and reverse your SFN. So if this is what your doctor is thinking, then I wouldn't advise trying it. But if you want to help slow progression, modulate your immune system a bit to help your fatigue (if you have it) and joint pain, then it may help. But it takes months to build up and become therapeutically effective and likewise has a long half-life (30-60 days) so takes a long time to get out of your system as well even after stopping it.

Just a little more information so you can better assess whether this medicine is right for you.
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Old 03-11-2015, 02:56 PM #7
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Quote:
Originally Posted by en bloc View Post
Healthgirl,,

Another thing I should say. The Plaquenil is used to treat the Sjogren's, not directly treat the neuropathy. If she feels the neuropathy is caused by the Sjogren's, then I guess she feels treating the underlining cause will help the SFN. It's actually not very effective in this manner. If your main symptoms are neuropathy related, then stick with something that is KNOWN to help immune mediated SFN, like IVIG.

Plaquenil is primarily used to help with some of the symptoms of Sjogren's...like reduce fatigue, and joint pain. It is also thought it help slow progression (but not well documented for this). It is not expected to halt the disease process and reverse your SFN. So if this is what your doctor is thinking, then I wouldn't advise trying it. But if you want to help slow progression, modulate your immune system a bit to help your fatigue (if you have it) and joint pain, then it may help. But it takes months to build up and become therapeutically effective and likewise has a long half-life (30-60 days) so takes a long time to get out of your system as well even after stopping it.

Just a little more information so you can better assess whether this medicine is right for you.
It's funny, well not really, but 2 rheumatologists have asked me if my neuros have tried IVIG even though I don't have a found cause for the neuropathy and just the high ANA.
When I ask them why they won't try it, they say because they haven't found a cause yet. So now I'm being told even if my sjrogens is positive all that will be offered is plaquenil or rituxin. I wish someone would let me try the IVIG to see if it would help. I feel like I'm on a sinking ship and they are just watching me drown sometimes.
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Old 03-11-2015, 03:09 PM #8
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You should qualify and be approved for IVIG with a positive skin biopsy and high ANA. The positive lip biopsy would be icing on the cake, but you already have enough if the skin biopsy is positive. Are you in the US?
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Old 03-12-2015, 06:59 AM #9
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Quote:
Originally Posted by en bloc View Post
You should qualify and be approved for IVIG with a positive skin biopsy and high ANA. The positive lip biopsy would be icing on the cake, but you already have enough if the skin biopsy is positive. Are you in the US?
Yes, I am going to NYC doctors and even with the positive skin biopsy and high positive ANA they won't use IVIG.
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Old 03-12-2015, 10:58 AM #10
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Default Has anyone read the more common side-effects of Lyrica?

More common:
•Accidental injury
•bloating or swelling of the face, arms, hands, lower legs, or feet
•blurred vision
•burning, tingling, numbness or pain in the hands, arms, feet, or legs
•change in walking and balance
•clumsiness
•confusion
•delusions
•dementia
•difficulty having a bowel movement (stool)
•difficulty with speaking
•double vision
•dry mouth
•fever
•headache
•hoarseness
•increased appetite
•lack of coordination
•loss of memory
•lower back or side pain
•painful or difficult urination
•problems with memory
•rapid weight gain
•seeing double
•sensation of pins and needles
•shakiness and unsteady walk
•sleepiness or unusual drowsiness
•stabbing pain
•swelling
•tingling of the hands or feet
•trembling, or other problems with muscle control or coordination
•unusual weight gain or loss

* There are less common SE's as well. These are just the common ones.
http://www.drugs.com/sfx/pregabalin-side-effects.html
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