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Joint problems started when down to 7mg and 6mgs.

Posted , 10 users are following.

Flutterbie57
Flutterbie57

I was doing so well for a while, but knees, ankles, 1 elbow and now both hips have started giving way on me. It starts with a short, sharp, bone on bone type pain, followed by joint not working properly. It isn't arthritis. Rheumy thinks it may be a very long technical term I have forgotten, which means adrenals having a hiccup and muscles not kicking into action, immediately. Not sure yet if this is pmr/pred related or if I am deteriorating with something else. Has anyone else suffered from similar problems?

1 like, 18 replies

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  • EileenH
    EileenH Flutterbie57

    Posted

    If I develop discomfort in joints like that it is almost always the PMR reminding me it is still there. For me it happens at higher doses as well as lower ones - the evidence I think that the a/i part of PMR cycles, rising and falling but generally on a downwards trend. It was a fairly early manifestation of PMR in elbows, wrists/fingers and one knee in particular for me. Part of PMR is synovitis - inflammation of the linings of the joints.

    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      My new joint pains are quite different from anything else I have had in the past. After the short, sharp pain, the joint collapses on me, making me feel very insecure and prone to falls. Do your joints collapse as well ?

      They usually remain painful for a few weeks afterwards and are tender to touch. One knee did take a long time to improve, but it did recover immediately after being treated by a Chiropractor's zappy piece of equipment which I suspect may be a Tens type machine.

      Now both hips have had the same issues three times this week. I have to wriggle the hip/leg round at first to be able to move again. I kept on moving all day and the pain gradually improved some, but by the end of the day I felt like the 'tin man'. Every joint felt rigid. Does this follow the same pattern as yours ?

      Life is never boring at least

    • Flutterbie57
      Flutterbie57 EileenH

      Posted

      I feel like all my rubber bands have broken Eileen.

      When it happened in the knees, there is a really sharp bone on bone type pain, then it is as if there is nothing holding the knee joint together, the leg buckles/gives way beneath me, and if I can't grab something in time, I fall down. The knee starts working again quickly, it moves ok, but is tender to touch for weeks after.

      When it happened in the ankles (always one joint at a time thank goodness) I did have time to transfer the weight to my other foot and save myself.

      The hips were horrible though. Not keen on them having a hiccup again.

      I am hoping it will all go away eventually. Gajet has given me hope that all joints may settle in a few months. Palindromic may be possible, although I have no outward signs of redness. Osteo is suspecting Ehlers Danlos, a genetic problem, which sounds highly likely. but there is at least an 8 month waiting list for genetic testing. They can do something about the pain nowadays if it is that.

      I am hoping I follow in Gajets footsteps and it will gradually all settle again.

    • EileenH
      EileenH Flutterbie57

      Posted

      How bizarrre - and most unnerving! I love the "my rubber bands have broken" description! Bit late to think about ED - is there any evidence of it in the family? There is an old post on HealthUnlocked describing something very similar - but they didn't follow up with what the doctors thought!! One cause for knees I remember seeing mentioned is crystals of some sort in the joint fluid - that is the cause of the sharp pain. Has anyone suggested imaging of the joints it happens in?

  • Danrower
    Danrower Flutterbie57

    Posted

    Was the very long tech term** remitting seroseronegative symmetrical synovitis with pitting edema** (RS3PE)?

    • EileenH
      EileenH lynda62707

      Posted

      Lynda - there is a limit to what can be put in layman's terms and Dan was asking a question about the specific term! If you want to know what it is, google it.

    • Flutterbie57
      Flutterbie57 Danrower

      Posted

      I am not sure. Unfortunately I am in chaos here at the moment (renovations and family members moved in), and I can not remember where I put the med letter . Do you suffer from something similar ? And do your joints collapse under you ? That is the part I am really not impressed about.

    • peggy_56092
      peggy_56092 Flutterbie57

      Posted

      PMR, before diagnosis, affected both knees; one swollen, had to be drained and both received steroid shots, plus torn rotator cuff. Ankles tender, carpal tunnel pains. Pred relieved all. Perhaps you need to up the pred?

    • peggy_56092
      peggy_56092

      Posted

      Did you get xrays of your knees?

    • Flutterbie57
      Flutterbie57 peggy_56092

      Posted

      Yes, they x-rayed my knees. There was no sign of any arthritis at all. I was so excited, like a child at Christmas, that at least I did not have arthritis. 😃

  • gajet
    gajet Flutterbie57

    Posted

    I have experienced something similar.At the 18 month point of having PMR one knee and one shoulder became painful and the knee issue affected walking. I was tested for RA (negative) and knees were x-rayed. They did not show much osteoarthritis. After about 6 months of this I was concerned that it could be a side effect of prednisone. I was on about 7mg at the time and it did not seem to be helping with the joint issues, which were getting worse. I did not want to increase the prednisone and made a decision to work my way off of prednisone. My conventional doctor could offer no suggestions and guessed that the cause was osteoarthritis not the PMR. In his experience he said it was unusual for knees to be involved in PMR. It was not an easy process to work my way off of prednisone and of course a very individual decision. My CRP was still very high. Subsequently the knee issue spread to both knees (usually one at a time) and my ankles also became involved. I started having weekly acupuncture, which helps to some degree. At this time (5 months off prednisone) my knees and ankles are getting better and my shoulder joints are close to normal. I can't offer up any advice, but I just wanted to share this as it does seem that sound joints can become involved in PMR. I hoped you'll keep us posted.

    • Flutterbie57
      Flutterbie57 gajet

      Posted

      Excellent news ! I do hope you continue on your journey without prednisone. Thank you for replying with your experience. My new Doctor's view is that I will go through all sorts of weird and not so wonderful new body experiences as I am readjusting to lower doses, and it will all just take time to settle down, which it sounds like it is doing in your case. How is your CPR now ? Mine has always been normal.

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