Stef, I'm sorry you had such bad consequences. Hand deformities have been a big fear for me. Rheumatoid arthritis ravished my grandmother's hands and is starting to affect my mom's hands as well - seeing what it's done to them can be heartbreaking. My grandmother ended up getting her fingers straightened on one hand. Have you looked into something like that? The surgery didn't result in perfect hands, but it did allow her to regain self-sufficiency on many daily tasks.
I saw my rheumy today. I asked her about a connection between the plaquenil and the pain and she thought it was highly unlikely since I’m on half the dose she usually prescribes. She was reluctant to take me off of plaquenil since she wasn’t the one prescribing it and it is keeping the hives at bay. The plan of action is to take a low dose of steroids for a week or two (I’m not a big fan since I had complications from steroids before, but she the risk is minimal and wouldn’t let me talk her out of it). If the steroids don’t stop the flare, she’ll switch me from oral to injectable methotrexate and will increase the dose if necessary. If that fails, she’ll add in sulfazine. If all of the above fail and I get progressively worse, she’ll probably start me on Cimzia. For now I'll play be her rules, but if i start seeing damage or feel that i'm getting markedly worse, i'll call the allergist and ask him if i can stop the plaquenil.
The other bit which I found a little disconcerting was that she had been leaning towards a diagnosis of crohn’s related arthritis, but based on current symptoms she’s leaning towards a mix of rheumatoid/pseudo-rheumatoid and psoriatic. (My grandmom and mom never tested positive for RA even though they definitely have it, so being negative for RA factor doesn’t mean much in my case.) For treatment purposes the type doesn’t matter so much, but each type has a slightly different pattern of damage. Having seen the damage RA can do, I was really hoping it wasn’t RA. It’s not an official diagnosis yet, so I’m still holding out hope that it’s another type.