Why is my finger so lumpy?
May 5, 2011 5:50 PM   Subscribe

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

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?
posted by Tandem Affinity to Health & Fitness (8 answers total) 2 users marked this as a favorite
Best answer: So to sum up, can anyone suggest any other avenues to explore as far as a diagnosis?

I see you live in a city with a major medical school. Going to the UMass rheumatology practice would be a good next step. As much as I value the input of the HiveMind, I think you would be better served by UMass Medical School's collective expertise than Metafilter's.
posted by Wordwoman at 7:16 PM on May 5, 2011

IANAD but phototherapy is sometimes used as a less extreme treatment for psoriasis, and I think it might also apply to psoriatic arthritis.
posted by monkeys with typewriters at 8:19 PM on May 5, 2011

So you've seen an orthopedic surgeon, his physicians assistant, and a rheumatology nurse practitioner, if I'm reading things correctly. If things like rheumatoid nodules and diagnoses of psoriatic arthritis are in the mix, plus immunomodulators are being suggested, I would definitely see an actual rheumatologist (which it sounds like you might be with your second opinion). Rheumatologic diseases can be notoriously difficult to pin down sometimes, but I would hope a rheumatologist could (a) help you figure things out in terms of diagnosis and (b) give you an educated perspective on the risks and benefits of the treatments being suggested in your situation. As indicated above, if there's a major medical school-related rheumatology clinic nearby, that would be a good place to start with your questions.
posted by flying kumquat at 8:27 PM on May 5, 2011

Best answer: This doesn't quite sound like a duck, and it's not responding to therapy like a duck, so maybe it's not a duck. Go get reassessed by a good academic rheumatologist.

Psoriatric arthritis (PA) without preceding psoriasis is possible, but not that common. Only about 15% of the cases. It also usually responds to the drugs you've tried. NSAIDs are the first line of therapy, followed by sulfasalazine and methotrexate. The big guns are usually reserved for the more aggressive subtypes of PA, which you don't describe.

Do you now have or ever had psoriasis? Did a first degree relative have psoriasis?

Do x-rays's show erosion of the DIP joint (the last joint)? That is typical of severe or advanced PA.

Is your nail involved? Are there nail pits?

Based on what you posted, you don't meet the CASPAR criteria for diagnosis. From what you've posted, you sound like you have two points, and you really need three points for a good diagnosis. If you don't have nail involvement or psoriasis, I would be leery of the diagnosis without more information.

What you do have sounds like dactylitis, which is a fancy term for a sausage digit,

One disease that comes to mind is Sarcoid. Its not common, but could cause the "rheumatoid nodules" and the dactylitis. It doesn't sound like Reiter's syndrome. You may have a Spondylarthropathy, but you don't describe any other symptoms. Have you been tested for HLA-B27? Another possible cause is flexor tenosynovitis.

It could be PA, but personally, I would hesitate to hit you with methotrexate or Enbrel without a more definitive diagnosis.

PS - your orthopod should have sent the tissue for pathology, particularly because it was an unexpected finding.
posted by Meta-4 at 8:39 PM on May 5, 2011

Best answer: Tandem Affinity, this isn't any revelation specific to your condition, but you are not required to take any recommendation for medication treatment - it's simply a recommendation. If you cannot tolerate the drugs or don't feel that the condition you're treating is bothering you much, it is your prerogative to choose not to take the drugs, as long as you ensure that you fully understand the risks and benefits related to the drugs as explained by a rheumatologist.

Meta-4, maybe the orthopod should have sent it for path, but this isn't our patient and we do not know all the details of the case, so I think it is best not to throw our colleagues under the bus.
posted by treehorn+bunny at 10:12 PM on May 5, 2011

Meta-4, maybe the orthopod should have sent it for path, but this isn't our patient and we do not know all the details of the case, so I think it is best not to throw our colleagues under the bus.

That's true. Sorry about jumping to conclusions.
posted by Meta-4 at 11:17 PM on May 5, 2011

Other people have made good points and suggestions. As someone who has been on biologics for awhile now, first Enbrel and then Humira, I just want to say that they really are wonder drugs and their side effects, for most people, are much less than much more commonly used drugs, like NSAIDs or Tylenol. Yes, the pamphlet of possible side effects is scary, but for most people they amount to little more than a slight increase in susceptibility to every cold that goes around. If you're risking permanent joint damage, they are much, much better than that.
posted by hydropsyche at 4:45 AM on May 6, 2011 [1 favorite]

Best answer: Reading your story quickly, "autoimmune" screams in my head. I've had some experience with undiagnosable autoimmune/arthritis-type illness, and it's tough to get pinned down. That being said:

1. As Wordwoman advised, go to a teaching university and have their team work you up. UCSF is the only place that has really been thorough with me and explored even the stuff I didn't think was relevant to find answers.

2. DO NOT go on methotrexate (!!!!!!) if there are any other possibilities. Many of the complications I experienced were due to taking that drug for relatively minor complaints...if I had it to do again, I would not go anywhere near that drug again. What you're describing does not sound bad enough for the risk to justify that treatment.

Good luck - I hope you get it all figured out soon.
posted by guster4lovers at 11:40 AM on May 6, 2011

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