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Reducing meds

Posted , 12 users are following.

sharon61808
sharon61808

I was diagnosed with PMR and Temporal Arteritus early December, 2015.  My initial dose was 60mg for 2 weeks which mostly controlled my pain, except in my left side hip area and thigh.  My doctor did not think this related to my pmr, but it did improve over those 2 weeks and my bloods were down so I went down to 50mg, which was holding OK.  I was then put down to 40 from the 1st of Feb and within 2 days the pain in my hip returned and my temple pain reappeared but not as bad as before.  I have now put my meds up to 45, this is the 2nd day and there is some relief but only minor.  As it is early days for me I would welcome advice and information about what to expect when lowering prednisone.  My rheumatologist has given me a program whereas she wants me to drop down 10mg every month to get back to 10 per day and then start dropping it by one.  I imagine that this is a recommended procedure but that everyone is different.  Before treatment I was at the stage where I had blinding headaches and extreme pain in my arms and I could not use my legs very much, had to get a walker to get around.  I am now moving, but still with a lot of discomfort.  I was wondering if the pain in my thigh could be from the Temporal arteritus and if I should get scans done of my main arteries in my legs to see what is happening.  Thanks Sharon

1 like, 27 replies

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  • pam21073
    pam21073 sharon61808

    Posted

    Hi I have had PMR for two years and had just came down off of the prednisone last month and then suddenly got a terrible headache two weeks ago with eye pain and blurry vision and called my Rheumatologist  and went in and he said I had Polymyaliga Arteritis or Temperal Arteritis so he started me back on 60mg of prednisone. Since then I have went to the ER with chest pains and had two severe spells with my headaches, eye pain, blurry vision and sensitive to light and on the side that hurts the worst you can see swelling and a dark blue veins coming down from the forhead to beside the eye but It is not buldgeing. I called to let him know that all of this had been going on but he is still lowering my prednisone 10 mg every four days and I do not go back to have any blood work or see him until May. Yesterday I also had red spots to come up on my tongue and was just wondering if anyone else has had this to happen with this disease. A little worried that waiting till May might cause some eye problems if not treated but my doctor doesn't seam worried at all.

     

    • EileenH
      EileenH pam21073

      Posted

      I would say go back to the ER if the symptoms are persisting - if you still have symptoms of temporal arteritis you should not reduce further, possibly you may even need a higher dose.

      And find another rheumatologist urgently. If he diagnosed temporal arteritis you need high dose pred for months - not weeks so he doesn't know what he is doing. I assume you are in the USA so that is an option - but in the meantime, the ER is the first place to go.

    • pam21073
      pam21073 EileenH

      Posted

      I am still having some headaches that come and still concerned that the doctor did not do a biopsy to see if I was positive for GCA. Ever since PMR and temporal arteritis came back in full force My lower back and hips are hurting so bad that it is hard for me to stand or walk for any period of time, it feels like my back is going to break into, and my tongue has gotten red spots on it and is sore  along with the inside of my mouth and my throat down into my neck. I was just wondering if this could be part of the PMR or temporal arteritis or if something else could be going on? This never happened during the two years I was on the prednisone before.
    • EileenH
      EileenH pam21073

      Posted

      If you have been on pred for any length of time then the biopsy is even less likely to have been positive than it is anyway - less than half come back having identified giant cells, despite the symptoms being very indicative of GCA.

      The back problems could be associated with PMR though not necessarily just PMR, there are other back muscle problems that often appear alongside PMR and make it all feel even worse.

      However - the red spots and soreness are not typical of PMR - GCA can lead to problems with the tongue such as claudication and necrosis if the blood supply is affected but that usually takes the form of pain when using your tongue and often dark areas under the tongue.

      You must see a doctor and insist on being taken seriously - take someone with you if necessary who will vouch for your state. It often concentrates their minds!

    • iellen32
      iellen32 EileenH

      Posted

      Hi EileenH all I've been reading on the discussions regarding the quick tapering of the Pred by most part of the doctors and the unfortunate consequences it brings sound familiar to me.

      Having GCA I have been facing flare ups and my rheumy seems to ignore all the evidences the same way I can see other docs do.

      Sometimes our markers may be ok but when our symptoms are not - as you say, it means the inflammation is still running there.

      To keep my sigh is my biggest concern!

      I go to the ER everytime I need it and the same I do with the eye doctors.

      Thank you so much, EileenH, for your clear explanations and your precious advices.

  • Elijo
    Elijo sharon61808

    Posted

    I was started on 40mg. Nov. 1 when first dx, then down to 30mg. Dec. 1 until March 30, however I have been having so many uncomfortable side effects I've requested an earlier reduction.  So recently went down to 25, then 20mg which I'm on until March 15 when he said to go down to 15.  I see him on Mar. 30.  After the 15 it will be a very slow reduction so it doesn't return.  I feel OK, and no return of pain or stiffness yet!.  Does anyone have any comments?
    • EileenH
      EileenH Elijo

      Posted

      If it is PMR, 40mg is far too high anyway, 25mg is the recommended max. starting dose.

      If it is GCA then that is a different matter and no pred side effect is worse than risking your sight.

      But I would not do 5mg drops even now - the recommendation for years has been not more than 10% of the current dose to make it less of a shock to the body in terms of steroid withdrawal. Doing 2.5mg twice is the same and much more comfortable. 

    • Elijo
      Elijo EileenH

      Posted

      Thanx Eileen, will definitelyi consider this.
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