LPN - it's interesting you're feeling Plaquenil isn't working as well for you, lately. As I said, it seems to be keeping things in check, compared to life without it, and while that is true - I wish it was working a little better, and have been wondering myself about
whether I shouldn't be taking something else. I don't think a higher dosage of Plaquenil is worth the risk, or is one doctors are comfortable with. It would seem MTX is the usual next step. And I don't know if I want to do that, either.
I can tell you that last year, I cut my dose of Plaq in half (going to 200 mg per day instead of 400mg). This was on the advice of a former rheumy who felt my symptoms/problems were falling more into the fibromyalgia category. I was happy to follow that advice, feeling that it had stopped working as well as it did initially, and hey - I'd rather "just have fibro" than a connective tissue disease to on top. The flare that I experienced after about 4-5 weeks of only 200 mg a day was not pretty. I knew then, that the Plaquenil had been doing far more than I was aware of. I went to a new rheumy (head of dept. at teaching hospital) and he told me it would have taken about that long (5 wks) for the Plaquenil to be out of my system, and that I needed to get back on the 400 mg and stay on it. We just keep monitoring and watching.....and waiting, I guess.
It is frustrating to have solid answers remain out of focus. I had a rheumy tell me it's like there are three CTD's circling overhead, and we just have to wait and see which one(s) actually "land". All the while, of course, the body feels like a crash landing anyway!