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Life after PMR ... not what I was hoping for!

Posted , 8 users are following.

FLpanhndlKen
FLpanhndlKen

I've posted here a few times recently about the progression of my 2.5+ yr experience with PMR, most notably the disappearance of PMR symptoms along with the appearance of avascular necrosis in both shoulders, possibly caused by prednisone. Since then I have been slowly reducing to the final dose (and listening to Eileen's advice that the fatigue may actually be worse). First shoulder replacement scheduled later this month, and all was well. Monday this week I noticed a really big knot growing on the outside of my right wrist, tender, warm, a little red, then found a similar place, not quite as big on the left wrist. This forum had acquainted me with (among many, many things) Late Onset Rheumatoid Arthritis, so in reading I was struck by the reference to "the symmetrical appearance in the hands."  I managed to catch a cancellation with my PCP the next day, and he shook his head as he affirmed that was probably what we were looking at. Oddly, on the other side of my hands, my thumb arthritis (about a year old and quite advanced) was looking a little flushed too. I thought, "Well, this is interesting, I seem to have osteoarthritis and rheumatoid arthritis going on on two sides of my hands!"  Treatment? Back to 20 mg preds, this time with methotrexate. So now I have to ask the question "Are autoimmune diseases sequential?"  On the subject of my surgery, I'm trying to get in touch with the surgeon to see what his reaction is to this development. I want my new shoulder! Been keeping pain reasonable with Tylenol and ibuprofen ... don't need much with 20mg preds. I had hip replacement surgery on 20mgs in 2015; double knee replacement on 12.5 mgs in 2016; but this is a new surgeon. Wish me luck!

0 likes, 6 replies

6 Replies

  • Anhaga
    Anhaga FLpanhndlKen

    Posted

    Oh my goodness.  Yes, I wish you luck!  I hope things go well with the surgery and your current treatments are effective.  Take care.
  • maria49950
    maria49950 FLpanhndlKen

    Posted

    winkHope all goes well with your surgery and you get relief.  My recently diagnosed PMR pain pales into insignificance compared to what you are going through.  I wish you well.

     

  • celia14153
    celia14153 FLpanhndlKen

    Posted

    Crikey! The only thing that seems good here is that there is a possibility of a new shoulder and that Pred works for pain. What a business it all is! In the end you don't know whether you are combatting disease or the side effects of the drugs you take to cope with the disease. Your question is a good one but I suspect could only be answered by specialists in the field. I do hope all goes well with your new surgeon and wish you huge amounts of luck 

     

  • EileenH
    EileenH FLpanhndlKen

    Posted

    Not really sequential - but once you have one autoimmune disorder you are at a higher risk of developing another. And really - the question DOES have to be asked - was it perhaps NOT PMR but LORA with a polymyalgic onset? 

    I think they are ALL much the same disease - just the symptoms you display because of which tissues are attacked result in different labels. I think that a much more helpful diagnostic process would be if they could identify the mechanism of your symptoms in the form of why cytokine (or whatever) is doing the damage and work on that. Which, to all intents and purposes, is what is happening with the biologic drugs. Actemra/tocilizumab works somewhere in the IL-6 cytokine chain - and helps in some RA and also PMR/GCA. Anti-TNF drugs don't help, even hinder, in GCA. All terribly complex.

    There are plenty of RA patients who have joint replacements because of the RA - so you appear to be several steps ahead on that. lol Don't know offhand if the people I know had to stop their medication - perhaps a question on a good RA site might answer that.  No chance of going back to the previous surgeon - if he was worth it that is?

    • FLpanhndlKen
      FLpanhndlKen EileenH

      Posted

      Oh, he was well worth it — one of the best. In this age of specialists, though, he only does hips and knees. He recommended the shoulder surgeon, though, and I like him a lot. I just don't know where he is with "inconvenient" patients! Will find out. Your analysis of the PMR-LORA thing is interesting, but I don't have any reason to think what I was suffering from for 2.5 yrs was not PMR; and this RA appearance in my hands really is quite sudden and quite dramatic! Not trying to borrow trouble, I'm also sensing some things in my ankles that weren't there before. I guess my artificial knees are off-target, though!

    • EileenH
      EileenH FLpanhndlKen

      Posted

      Not just my analysis Ken - it is something some rheumies think too. About 1 in 6 patients first diagnosed with PMR get a different diagnosis at some later point - and LORA is a common one. One of the spondyloarthropathies raises its head a lot too.
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