Please help with any diagnostic insight you might have (or insight as to how to get a better diagnosis), as well as alternatives to treatments that I am intolerant to trying
posted by Tandem Affinity to health & fitness (8 answers total) 2 users marked this as a favorite
I'm not satisfied with the answers I've gotten from doctors so far as to what is causing hand and wrist pain/swelling, nor do I like any of the options going forward to treat it. I plan to get a second opinion soon, but in the meantime I thought it couldn't hurt to survey the hivemind.
Things started with several years of low-grade wrist pain, no swelling. A year ago I went to see an orthopedist about it, because I thought several years of pain, even if not major, was something to fix. The pain was responsive to corticosteroid injections that I had once or twice. An MRI with contrast revealed no abnormalities really (no tears or injuries), but there was a little edema, at a site removed from where I had pain, as well as some bone bruising. My doc said, nothing conclusive. Between getting the MRI and having the appt with the doc to go over the results, all of the sudden one day, I had these HUGE painful bumps all over the wrist -- like 3 golf balls of inflamed tissue. My orthopedist's PA gave me 60mg of prednisone plus a week's taper. THe 60 mg made the balls disappear and they gradually came back during the taper. So I had a synovectomy (I didn't understand at the time how all my symptoms, few that they were, were aligned with some sort of immune reaction arthritis). The orthopedist took pictures of the inside of my wrist during my synovectomy and it turned out that those golf balls were rheumatoid nodules. They did not send *anything* to the pathology lab (makes me very angry -- I understand the patient needs to be proactive, but really, I've got to specifically ask that unusual tissue formations be sent to the path lab?????). The synovectomy made my wrist look mostly normal and got rid of most of the pain, but two weeks after the surgery, my pinky finger swelled up like a sausage, very painful. It has been swollen, with brief intervals of relief from high dose prednisone, for the past 6 months. The swelling is centered on the last and second to last joints (typical of psoriatic arthritis). This is the only place on my body I have any sign of anything wrong. No psoriasis and no pain or swelling anywhere else. My wristpain has returned to some degree. All blood test (all the arthritis markers) comeback negative, except CRP, which is only slightly elevated.
So in an effort to treat the swollen pinky and to stave off further arthritis, during the past six months, I've tried meloxicam and sulfalazine (since the surgery, I've been under the care of a rheumatologist NP, not the orthopedist anymore). No relief, but also no progression. I'm in the midst of trying celebrex 2 x 200 mg/day. If this doesn't work, next up, according to my rheumatologist, is methotrexate and then things like Enbrel. Wow, those are hardhitting drugs for a swollen pinky. I understand that arthritis is progressive, and maybe if I were in worse shape, I'd be more gungho about starting on these things, but with just the pinky, I'm *really* leery. The anxiety I would have over what other condition might develop from the side effects of these drugs, is at this point worse than my pinky symptoms. The pinky mostly doesn't interfere with my day-to-day life, although I do get asked about it. It looks really bad and really painful (although it's actually much less painful than it looks), so of course I'd love to 'fix' it, but I can't spend the next x years anxious over what these drugs can do. I also am afraid of that general 'feeling not-so-good kinda all the time' that people describe from them. I definitely got that from the Prednisone, and again, that is way worse than the pinky.
So to sum up, can anyone suggest any other avenues to explore as far as a diagnosis? The diagnosis of psoriatic arthritis is based on the asymmetry, the response only to high doses of prednisone, and the specific joints of my finger that are swollen. (and all the tests for RA, etc. that came back negative). The rheumatoid nodules, which were ID'd only by the picture, have been explained as a possible hypertrophy instead. I insisted on a test for Lyme disease, but even I think that's an unlikely candidate.
If it is psoriatic arthritis (or if I don't get a better diagnosis), what should I try next? Both for immediate symptoms and for general arthritis slowing. Is there nothing less scary than the methotrexate and the biologicals?