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the malaria dosing (which is significantly higher than that for autoimmune disease), since that's what Plaquenil was originally made for.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.