Plaquenil

[Lola]

Sammers,

At the risk of causing an outcry, I will say that I was prescribed Plaquenil for my undiagnosed autoimmune disorder in 1999. At the time I was fatigued and had extreme pain in my feet. I did not have any other signs/symptoms of Wegs, and the thought was that I had a connective tissue disorder of some kind, most likely lupus. In fact, it was Wegs. i remember having so much foot pain that I could barely stumble to my car after work. After 6 months of Plaquenil therapy, my foot pain disappeared and stayed gone until my latest flare in 09/09. I was effectively in remission, and stayed so until 2004 when the Plaquenil was no longer working, and I sought more answers. It was at that time that Wegs was diagnosed.

It was most likely a coinicidence, but it could be argued that I achieved remission of a very mild case of Wegs while taking Plaquenil. At any rate, I was in remission from 1999 to 2004.

[jola57]

I was thought to have polymialgia rheumatica when I was prescribed Plaquenil, Lola, did you take any other medication?

[sammers]

I cant say that i have ear or eye issues... once last year I did get an ear infection, but that was the first and the only one so far. I am really lucky in that my ENT trusts my judgment and all I have to do is give him a call when I feel like a sinus infection is coming on and he will send a perscription to my pharm. If i feel like I could use his assitance in 'cleaning out' my nose then I can usualy see him within a few days.

I use a sinus rince at least twice a day sometmes.... often three times... morning, when I get home after school (Im a teacher) and before bed usualy during a shower at the end of the day. This and i use an oitment twice a day, some heavy duty antibiotic that helps with the dryness. Since I started this the infections have really tapered off.

[sammers]

thanks Lola... keep your fingers crossed that I get to follow your pain free footsteps!!

[sammers]

I cant say 'yes' that it is for inflamation, as non of tha paperwork descriptions say this... My doc hopes though that it will have a positive impact on me and help keep any inflamation to a minamal.

[Jack]

Are you taking Bactrim (Co-Trimoxazole)? This will not only keep the sinus infections in check, but it has also been shown to help control Wegener's when it is not too active. It sounds like a drug you should consider, perhaps in addition to Plaquenil.

[elephant]

Sammers ,what kind of ointment are you putting in your nose? I really need to let my ENT know this. I would love to try it!

[jeriorleans]

A.J. was prescribed Plaquenil and told by his first doctor that he would be on it forever. When we got to Dr. Vogler in Atlanta the first thing he asked is "why is he on Plaquenil" and discontinued it immediatley. I did massive research on Plaquenil and Wegener's and could never find any research showing that it was the appropriate treatment. Needless to say... we don't see that doctor anymore.

[jola57]

Exactly my point, glad that Dr. Vogler threw it out. We take enough meds without taking needless pills.

[JanW]

What researchers seem to be proving now is that 'maintenance' medication may have less of an effective on remaining in remission, or warding off more serious complications in the future. So, that having been said, if your case of WG is indeed not very serious and you are trying to preserve your fertility, you may not need to be on anything at all (my doc has had a patient like this for going on 12 years), and your case may just bear watchful waiting until such time as it is bad enough to treat. However, what you're getting on now is simply not a proven WG therapy, whether or not it is helping with your symptoms, whether they go away is probably more likely to be random. I don't know enough about the drug to say whether or not it's benign, but assuming it isn't, I hope your doctor has explained why she thinks this medicine works for WG -- no matter how mild the case -- when there isn't research out there to support this.

For what it's worth, I didn't receive the standard of care at dx (which is pred + immunosuppressant; I only take an immunosuppressant) and my doctor explained to me thoroughly the reasoning behind not getting on the pred, as well as how quickly he thought the immunosuppressant would work). We went to bi-monthly monitoring to make sure that my bloods were trending in the right direction and it worked out for me. One of the things that the researchers stressed at the symposium is that if a doctor cannot explain, or isn't willing to explain to you, in minute detail, exactly what evidence he has that a treatment is effective, you should be concerned. And for the typical non-WG specialist the answer can't be "I've seen this work in my patients" because he won't have a good enough sample.

I wish you luck; my WG was undiagnosed for five years and it was at a sufficiently low level that I didn't suffer irreversible effects.