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.

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.

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.

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

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?

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.

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.

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

Oh, yes, many drugs cause side effects that are the same as what is being treated...Lyrica is just a boatload of problems in many ways too.

Drugcite.com has many lists of FDA reports with the %s of side effects.

This is Lyrica:
http://www.drugcite.com/?q=Lyrica

This is plaquenil:
http://www.drugcite.com/?q=plaquenil&a=&s=

Notice the graph at the top? This shows the timing of the reports. When that timing gets really low, that suggests not very many people are using the drug. Notice how many more people are on that timeline for Lyrica. That is because it is being still heavily promoted and plaquenil is not.

I see the incident of burning sensation and paraesthesia for Plaquenil was at the very bottom of the list at only .23%, so that seems to be very rare if less than 1/4 of 1 percent. It also doesn't say what dosing was used for the adverse reaction list, but I'd assume they used the malaria dosing (which is significantly higher than that for autoimmune disease), since that's what Plaquenil was originally made for.

Again, I would ask why they are not considering IVIG with the positive skin biopsy and high ANA. Those with idiopathic SFN would get it with just the positive skin biopsy. They know that immune mediated SFN responds well to IVIG. Maybe they will tell you why they are holding back this treatment.

I doubt I would take Plaquenil (even though risks are low) to treat neuropathy...it's just not effective for that (or even documented to be used to treat neuropathy). Just my two cents.

I really should add this: They typically don't just start with IVIG. They usually try the Neurontin, Lyrica, and Cymbalta route first, then if no help or not tolerated, they will consider bigger guns like IVIG. So maybe they are going to try other meds first.

Most insurances have a "tier" system. They will not approve expensive medications, until the lower tier preferred agent is used and proven to not work.

Really clinically there are not many people on plaquenil today.
I worked some of the busiest stores in highly concentrated populations...doing 200 -300 Rxs a day... and getting one plaquenil RX a month, was unusual. When the population is so low, then reports will be so correspondingly. Not all doctors even report them. A fairly well known toxic agent like plaquenil won't be reported like a new drug with little know history. The serious side effects for an old agent like plaquenil are not new news... but when Lyrica gives confusing or dangerous reports, those get reported more often because doctors are surprised and were not told to expect them. There have been sites that comment that less than 1% of all adverse reactions ever get reported at all. Doctors fear liability concerns...putting it down in writing, shines a light on them. And some are just too busy or jaded to even bother. That has been my experience and is my opinion.

I was actually wondering (when looking over the chart) how many really report the adverse reactions. I'm sure it's low. But I think the reporting (or lack of) would be representative of all side-effects. I mean, I don't think only the GI upsets gets reported and the neuropathy doesn't, so the position on the scale is likely correct (GI being highest and neuro being lowest)...if that made any sense at all (can't figure out a good way to explain my thought). But the % is probably higher for ALL side-effects.

I wonder if the use is higher now that autoimmune disease diagnosis has risen...especially Sjogren's, and this is the first line treatment. On the Sjogren's forum, a good 75% take Plaquenil...maybe even more.

But either way, NO drug should be taken unless absolutely needed and I don't see it as a benefit for Healthgirl to solely treat neuropathy.

Actually clinically Plaquenil was more commonly used in the past, when its patent was still active. We would have 3 or 4 bottles on the shelf in those days. But now? small stores would not have any until a person showed up and they would special order it.

Big heavy volume stores may have 1 to 1.5 bottles on hand. Because of the rising cost of drugs in the past 10 yrs... inventories are often followed by the computer...it will reorder when an RX is filled etc. Drugs go out of date quickly now, and dead inventory is just not feasible any longer. So if a person gets a new RX for Plaquenil the store they go to might have to order it for them. Then as it is refilled that store would rely on the computer inventory software to keep it in stock for that person. I would bet there are some relatively new pharmacists out there now who have never filled an RX for this.

When you go to Sjogren's forums, you have to realize that they come from all over... and even then not all would even be online.

from Wiki:
http://en.wikipedia.org/wiki/Sj%C3%B6gren%27s_syndrome
And not everyone who has this is going to be using Plaquenil.

Here is another example: How many people in US have
diabetes? One might guess a high number....based on all the press and commercials for it.
But according to 2014 CDC stats, it is only 9.3%....
http://www.cdc.gov/diabetes/data/sta...icsreport.html

Just out of curiosity now, I plan to ask the pharmacist at Walmart (they know me well) how many scripts of Plaquenil a month they fill. We are not in a large city, so I would guess very few, but nonetheless, I will ask.

I have to keep in mind, those that go to a forum are usually people with more advanced conditions...as for why there might be a higher percentage of Plaquenil users on the forum. Those with just mild symptoms of dry eyes/mouth are likely not seeking support from a forum.