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Rheumatologist says no PMR and get off predisone

Posted , 9 users are following.

Debkimly
Debkimly

I have been on predisone for three weeks and my internist sent me to the rheumatologist.  He immediately said I do not have PMR because it does not present in the hands.  He wants me off the predisone and then back in 3 weeks.  He will then test for RA.  Anyone else have this happen?

3 likes, 17 replies

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  • susan38611
    susan38611 Debkimly

    Posted

    I have pmr ,in my legs , back ,hips  shoulder, arms and neck, don't know if it is in my hands as I have arthritis in them, on pred ,but still in a lot of pain,xx

     

  • paula63201
    paula63201 Debkimly

    Posted

    Weird Doc, as far as I am concerned.

    What are your symptoms? PMR is sudden onset pain in hips, groin, shoulders, neck, even wrist. Hands, no. Stiffness, inability to life arms. Weakness. Awful pain. Nothing helps. Aspirin, no, Advil, no, Tylenol, no. Nothing except Prednisone.

    Did the Prednisone help you quickly and how much were you one? (Prednisone is also part of the diagnosis. If soon after you take it, within days, pain and wtiffness go away, then you probably have PMR)

    I was tested for RA, Lyme, HLA B27, etc, before I was diagnosed with PMR, so cannot respond to the timing, i.e., whether you have to be off steroids for these tests. My CRP and ESR were elevated, but not everyone with PMR has those bloods elevated.

    Good luck,

    Paula

    • Debkimly
      Debkimly paula63201

      Posted

      Started 20 mg and then 25 mg but hands still hurt in AM.
  • julian.
    julian. Debkimly

    Posted

    I'm confused - do you have it in hands but nowhere else, or not in hands but other places?

    Mine started in arms (pain) and legs (stiffness). Swollen stiff hands came later.

     

  • noninoni
    noninoni Debkimly

    Posted

    I have found oodles of different criteria for PMR, but not hands.  Hands are the classic symptom of RA, but could be osteoarthritis. 
    • Debkimly
      Debkimly noninoni

      Posted

      Thanks so I guess I will get off the predisone and then see. 
  • david60752
    david60752 Debkimly

    Posted

    Does the prednisone take care of the problem? What dose are you on?
  • 3party
    3party Debkimly

    Posted

    I entirely agree with paula63201. She raised the key question: Did the Prednisone help?  Did it help a great deal? Immediately?  Within a day or two?  As Paula says, the Prednisone is part of the diagnosis.  More specifically, when the physician gets to the point that s/he thinks it worth trying Prednisone, if it does not make a significant difference for the better, it is probably ot PMR.  If it does, then we are definitiely dealing with inflamation. If it is predominantly in the shoulders and the hips  -- not the hands --and especilly if it came on suddenly and in hip and/or shoulder joints which had never troubled you before, it is probably PMR.

    25 mg is a high dose, and  increasing the dose from 20 mg, itself a high starting dose, seems odd after so few weeks.  If I were in your situation, I would stick with the specialist.  Neither cause nor cure is known for PMR, abd there is very little controversy about what we do know about it.

  • EileenH
    EileenH Debkimly

    Posted

    The group in Leeds England have done work that has confirmed that PMR does affect the hands. There are plenty of people - me included - who had hand pain, it is synovitis so doesn't respond as quickly to the pred. 

    But the problem with using higher doses than 15-20mg in PMR is that other things respond at that level. If you only have hand pain and no other "typical" PMR stiffness then your rheumy is right in wanting to look for other things. However- he is wrong to say PMR doesn't affect hands.

    • 3party
      3party EileenH

      Posted

      Yes, the rheumy is wrong to say that PMR doesn't affect the hands, but he may have said that if the pain is predominantly in the hands, it is not likely to be PMR.  From what I have read,  the sudden, severe pain is typically in the shoulders and the hips, which accords with my own experience. I already had arthritis in my hands, but never in my hips, and only slightly in my shoulders.  With the onset of PMR, the pain in my hands became more severe and was intermittent.
  • Debkimly
    Debkimly

    Posted

    Thanks everyone.  I am not looking forward to going backwards but the predisone didn't bring significant relief.  
    • EileenH
      EileenH Debkimly

      Posted

      Don't look at it as going backwards. If the pred didn't achieve significant relief it is by no means the right drug, that is the one thing that makes it worth putting up with the downsides of pred, the weight gain, the fat moon face, bruising and skin that disintegrates if you brush it against the wall. You can put up with that and much more when you don't hurt all over any more and can more.

      Pain in hands is a typical starter for not only RA but other forms of inflammatory arthitis - and once your rheumy has done other tests he may be able to give you a drug that will make the pain far less bad. PMR only responds to pred, nothing else. Other arthritides can be managed with a whole range of drugs, they all have side effects, but often they are far less than those experienced with pred and achieve a far better result. 

      Good luck - and do come back and tell us what he decides it is and what he does. Because we get people like you a lot, on pred, not really much better, but their GP (usually) won't do anything. You have someone who isn't satisfied by a poor result - that is a good thing. And you haven't been on pred for months, put on a load of weight and then been told to stop the pred - it is relatively easy after just 3 weeks, you can pretty much just stop.

    • Debkimly
      Debkimly EileenH

      Posted

      Thank you EileenH.  I am now more encouraged that things are moving in the right direction.  I am also lucky to live close to lots of medical centers.
    • 3party
      3party Debkimly

      Posted

      As others have noted, If Pred didn't bring significant relief, your problem is unlikely to be PMR.  Pred is highly effective in reducing inflammation, and so it seems that your pain is caused by something else.
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