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Test for PMR

Posted , 4 users are following.

Mary_J
Mary_J

Hiya all. I have been treated for GCA  since last October with Preds. I am now on a low dose of 6mg. Since reducing however I have a lot of headaches especially when I wake up in the morning. Not the same pain as the GCA though. Also I have bad shoulder pain and lots of aches in my wrists etc. I did have a ' bad shoulder' before the GCA was diagnosed BT it is a lot worse now. I am wondering if I could possibly have developed PMR? Is there a test for it? It is worse some days more than others. I have mentioned to my Rheumy that my shoulder pain is back but it has got a lot worse since I saw him a month ago. I would be very grateful for your advice on this matter and also has PMR got to be treated with Preds? Thank you for listening. Love Mary xx

0 likes, 6 replies

6 Replies

  • pnjmj
    pnjmj Mary_J

    Posted

    Hi Mary J,

    I also have GCA, but have PMR too.  I was diagnosed Nov. 2012 and put on 60 mg prednisone.  I am now finally on 5mg and also had a recurrence of headaches and body pain.  Also my hands and feet get really sore and stiff.  I think these things are from the prednisone withdrawal.  I've talked with some others who experience the same thing at these lower levels, including some mental and emotional instability.  PMR is usually revealing itself in severe pain in upper arms, thighs and lower back.  Headaches seem to be a symptom of GCA. But like you, my headaches do not seem to be GCA at this point and they go away after about 4 - 5 days.  I've found that I usually feel a bit better in the third week after titration.  PMR is also treated with prednisone unfortunately as far as I know.  But usually a lower dose is enough.  At the lower levels our adrenal glands are beginning to function again and our bodies are going through alot to adjust.  I've heard that these low dose changes are very challenging. I'm determined to press through though as long as the GCA doesn't come back.  I really want to get off prednisone if at all possible (as does everyone else on it, I'm sure smile

    • Mary_J
      Mary_J pnjmj

      Posted

      Thank you for your reply. I've taken all you gave said on board. Just gave to take things slowly and see how things go. Good luck. Xx
  • EileenH
    EileenH Mary_J

    Posted

    To have been diagnosed with GCA and be down to 6mg within a year is almost unheard of - the usual time scale is 2 years. More importantly, the most recent research shows that the GCA is still active after 6 months of high dose pred (above 20mg) even though blood tests are normal.

    There is no definitive test for PMR and PMR is one of the symptoms of GCA. If what you have is mow "plain PMR" the best confirmation might well be trying a higher dose of pred. The normal starting dose for PMR is 15mg. The other question is are you reducing too fast/in too big steps which will also cause PMR-like symptoms. Reducing in very small steps helps avoid that - but in PMR few if us have got to 6mg in under a year, and we started from a much lower dose than for GCA.

    • Mary_J
      Mary_J EileenH

      Posted

      Thank you for your reply EileenH. When I was admitted to hospital last Oct when diagnosed with GCA my Rheumy told me initially that it can take 2years to come off the Pred. However do you think because I have been lucky to have been more or less symptom free while reducing that he has decided to let me reduce faster. Today my shoulder pain hasn't been as bad as yesterday. Does PMR act like that? Pain is still there but not half as  bad but maybe tomorrow it will be awful again. I am not due to see my Rheumy again until beginning of January 2015. I think I will have a chat with my GP if the persists and maybe he will advise an injection or whatever. I feel like a real grissler. It seems once one thing stops another thing starts. I know I am 65 but really don't want to become old and inactive before my time. Do you think swimming would help? I'll try anything. Thank you once again, I really appreciate you taking your time to give me advice. Love Mary xx
  • EileenH
    EileenH Mary_J

    Posted

    Ooops - didn't notice the last question - the only effective treatment to control PMR symptoms is pred, albeit at a far lower dose than for GCA. Shoulder pain is typical of PMR - but mostly both sides. It is due to bursitis and that can be helped with cortisone injections - which often relieves the other aches and pains and suggests that the problem is actually PMR.
  • Lee-Colorado
    Lee-Colorado Mary_J

    Posted

    I also developed GCA in Oct 2013. I suffered 9 losses of vision in my right eye and started on pred of 60. By May 2014, I was at 15mg and suffered a relapse that resulted in two losses of vision in my left eye.  I am now at 15 again and will see my Rhumatologist next week. At that time I have been told that I will be placed on a one mg reduction.

    a few questions:

    how many mg was your last reduction? the reduction should NOT be more than 10%.

    it takes 4-5 days for side effects to lessen a your body adjusts to the new dose. Please look at Eileen's entries on how to reduce pred at low levels. 

    observations on personal journey.

    I wish I had gone back to 20mg from the 15mg I tapered to before I had my relapse. It would have been so easy but I did not listen to my body.

    the Dr. gives general recommendations, they work of most people but we are individuals, listen to your body.

    I recommend that you go back to the last dose wher you felt better and see what happens. Then contact your Dr.

    my studies indicate that one can be just slightly under the dose of pred needed to control our disease and that the white blood cells which are attacking our arteries are growing in strength.  This means that you might have been developing these symptoms and they are strong enough to start causing problems.

    If I ever start developing headaches and muscle aches in the future I will go back to 20mg for a couple of days. Going blind will NOT happen because I didnot listen to my body!

     

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