The antimalarials, are related to the fluoroquinilones chemically.

Here is one article:
http://www.myquinstory.info/?p=57

Lariam also is in this family.

It is a chemical connection. And a potential problem for some patients.

Because Plaquenil is really not used much... the number of reports on it will be less.

Here are the Drugcite reports:
http://drugcite.com/?q=plaquenil
Click on neurological and the symptoms will be listed.
Because it is really not a commonly used drug, the number of reports is much less than for commonly used drugs.

Thanks MrsD.

I really thought Plaquenil was used quite a bit with up to 50 million people with autoimmune disease and it's first line for Sjogrens. RA, and even pretty widely used in Lupus as well. I know at least 3/4 of the Sjogren's board uses it..with the other 1/4 trying alternative / natural supplements and of course a few that had side-effects and had to stop.

Pruritus is about .57%, so not many, but I now think she it's possible she had a reaction to the Plaquenil that may have permanently damaged the nerves (since it didn't go away after stopping it...actually it got worse and started the pain after resolving the itch.

I wouldn't take it again, if I were her....AND BY ALL MEANS, IdiopathicPN should stay Flouroquinilones also based upon what Mrs D found...for multiple reasons now.

Sadly, I think every treatment has side effects of some sort. It's almost like having to choose the disease effects or the consequences for the treatment. This is when most us of turn toward something natural like vitamin supplements and balanced diets. Sometimes it works, sometimes it doesn't....both it's worth the try.

There was more info on the site MrsD provided that I wanted to comment on, but it crashed while I was using it and now it won't come up (an hour later). I'll check again in the morning and edit my posted if possible.

DrugCite.com does go down. I think they update it or do maintenance.

When I was working, I rarely saw scripts for Plaquenil. I worked relief and moved around quite a bit, in different neighborhoods, etc. This drug was rarely on the shelf in most of the places I visited. In the old days, when the patent was still valid, there was some movement. Typically one patient per store would be the average IMO. (many stores I worked at were very busy, doing hundreds of orders daily).

It is not even listed on Patientsville website. (drug reactions)
http://www.patientsville.com/drugsatoz.htm#P

Here is Askapatient:
http://www.askapatient.com/viewratin...name=PLAQUENIL
The itching factor seems fairly commonly reported, IMO on that site.

When you go on a forum on the net, you are seeing people from all over the country... it can give a false sense of how common something really is. And I think some doctors are afraid to use Plaquenil now. They will give Imuran or another autoimmune suppressant. Just my opinion based on experience.

Now I'm curious about how widely it's used. I know (quite well) the pharmacist at the Walmart, so I'm going ask next time I'm in there, roughly how many patients take it just for that store. It may not be as many a I would think.

The incidents (and severity) of side-effects seems lower overall with plaquenil vs any of the immune suppressants. Just the huge risk of infection with immune suppression would top the list. I literally came very close to death from an infection (an abdominal wall hematoma) while on Cellcept. There are also some other hefty side-effects with some of these cancer drugs and immune suppressors used for AI disease. Plaquenil has always been describe by the doctor as low-man on the totem pole.

If it can be tolerated (nausea topping the list of complaints), it really does help with some of the AI disease symptoms. But as for IdiopathicPN...based upon what she said happened (even though it's unknown whether it was the plaquenil), I think it would be too risky to try...IMHO

It is a tough decision all around!

It might be that the quinolone side effects are genetically mediated as well. Certain people may get them easily, and others not.

Going to drugchecker at drugs.com
and finding this:
Click on moderate interaction risk, for Plaquenil here is an example of neuropathy risk while using Lipitor:
http://www.drugs.com/drug-interactio...-0-1298-0.html

Plaquenil is an inhibitor of the enzyme: CYP450 2D6
This would be a hint as to its selective toxicity in some patients.

Mrs.D and en bloc,

Thank you for your discussions on the Plaquenil. It was informative.

Mrs.D, thank you for researching and posting the link on Plaquenil. This is a great help for those current and future posters who are currently on Plaquenil.

I will never know if it was indeed the Plaquenil which caused my neurological symptoms. Technically, I am neither here nor there, the neurologist does not categorized me of having a PN because of my normal NCV and EMG and my skin biopsy is normal....but the pain the continues.

It will be a real concern if, assuming I have AI, and I need to be on Plaquenil (being the first line of treatment). I agree with en bloc that other medicines for AI have more serious side effects. Thinking about it makes me scared.

I got copies of my bloodworks, you are right - its all within normal levels, even the ACE. My number for ACE is 32 (with normal range of 12 - 68).

Was your ACE, then, normal too? I wonder why ACE, being the test to determine inflammation, would show normal to some with Sjorgren's? What is so mysterious about this condition?

MrsD probably knows more about the ACE test then I do. I think it's more to diagnose Sacroidosis. It don't think it gauges inflammations in general. Mine test was normal.

If your rheumatologist thinks that Sjogren's is a strong possibility, then you should have the lip biopsy.

Back to the Plaquenil:
It is possible that within the Lupus community itself, this drug is "commonly" used or at least tried. Same with some of the other autoimmune conditions.
Also recently the new biologic agents for all the inflammatory type issues, where Plaquenil was previously used, are eclipsing the older agent.

Here is something interesting. I have this redness on my arms, which resulted from a severe reaction to the water on vacation, which blistered me. (a professor at WSU near me thought it was a reaction to an algae in the water...I only get it when the water turns warmer from being really cold. Otherwise I can go in the water and have sun and have no blisters or redness).

So I found this disorder recently:
http://dermnetnz.org/immune/rem.html

Guess what the ONLY treatment is? Plaquenil! In fact this condition is not well understood, and is not exactly a rash, as we know it. It blanches, and goes away when I lie down, but when I stand up or sit up gravity makes it red again. It is a vascular thing therefore in the deeper skin. It is a little less acute after about 4 yrs now, but according to what I am finding about it, is related to Lupus...but is "not Lupus"...in other words not understood. (Lupus tests negative, and I've had two Lupus investigations in the past which were negative both times).

I've hesitated to go to the dermatologist as my internist suggested, because this redness/rash does not spread, does not weep (you cannot feel it when you put your hand over it), it does not hurt, burn, itch, weep, bleed, or flake. In fact my skin is soft and normal except for the redness, which blanches on pressure. At this point it is not doing anything. Why expose myself to some potentially toxic treatment?

In fact I've been doing high dose Biotin for over a month now, and it seems to be fading the redness some. I am hopeful I can heal it this way.

Back to ACE.... I believe it is important because of your lung issues, Idiopathic, to have sarcoid ruled out. Sarcoid is tissue which is inflamed and deposited in organs and the CNS and needs to
be ruled out for your PN too. (neuro Sarcoid). So if you are low in ACE, then that is one potential you won't have to follow up on at this point.

That's my concern with this rheumy, when I mentioned about the possibility of sjorgrens, she seemed upset by telling me that I should not categorize myself with sjorgrens as all my tests are negative. She said that there are only very minimal numbers of patients who are sero-negative. I am afraid she is one of those doctors who go by the bloodwork numbers and not the symptoms.
Thank you.