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Cant get below 20mg

Posted , 9 users are following.

MR._BELLA
MR._BELLA

I have PMR since Sept. 2017. I cant get below 20mg pred. I have tried 2 times 2 1/2mg the first time, then 2mg the second time.

C Reactive Protien we t up both times to 3.3. and pain came back both times.

What do you all think j I should do?

I really want to lower my Pred. because I have osteoporosis.

0 likes, 7 replies

7 Replies

  • EileenH
    EileenH MR._BELLA

    Posted

    Your rheumatolgist should be investigating whether there are any signs of this not being PMR. PMR is the name given to a certain constellation of symptoms due to an underlying cause - there are several. Some forms of inflammatory arthritis present looking just like PMR - but they respond better to other drugs. 
    • MR._BELLA
      MR._BELLA EileenH

      Posted

      When I first got diagnosed with PMR I was put on 20 mg and all the pain went away. But, then they reduced it to 15mg and all the pain came back. I then did the dsns method and got to 18 but in about 1 week all the pain started back.

      I will talk to my Dr. and ask him about what you stated. Thamks

  • DebbieHurts
    DebbieHurts MR._BELLA

    Posted

    I have had the same problem of getting the pred reduced.  And so the drs think it just might not be PMR.  I've had test after test, all OK.  My next test is for nerves as in neuropathy.  I took pred for years and my rheum. was very worried about it.  She sent me to an endocrinologist who put me on hydrocortizone to replace the pred.  It doesn't help much with the pain, but I am trying to get along with it.  The pred made me gain way too much weight, even when I ate right!

  • Guest
    Guest MR._BELLA

    Posted

    I was diagnosed in March this year by GP,started on 50mg prednisolone for about a week, she was suspecting GCA as I had scalp pains well as other PMR pain and stiffness. Soon reduced to 20mg. Saw one rheumatologist who fixated on fibromyalgia and nerve pain but also commenced methotrexate. Gave him the push and I am seeing another rheumatologist later this month. 

    Like you I cannot seem to get below 20 mg Pred. I reduced it to 17.5 mg a few weeks ago and had an increase in pain and stiffness. Reduced again 2 weeks ago was fine for about 5 days, but on holiday and increased activity more pain and stiffness so after a couple of days of feeling crappy have increased again to 20 mg. 3rd day on 20mg and still feeling crappy. Last time it took 4-5 days on 20 before I felt better so I am hoping tomorrow or the next day I might feel better.

    Like you I want to reduce the dose of steroids and I am having a hard time coming to terms both with taking steroids and having PMR.

    I guess we have to stay on a dose that controls the condition and manage the steroid side effects as best we can.

    • EileenH
      EileenH Guest

      Posted

      To still be at 20mg having started with 50mg in March this year because of suspected GCA is perfectly normal. If you try to force to get lower you run the risk of ending up having to go higher - just what you don't want. There is evidence that the underlying cause of GCA is still active after 6 months at higher dose pred - i.e. over 20mg. Everyone wants to reduce their dose - but the PMR/GCA is in charge, not you or the doctor. It makes the rules.

    • Anhaga
      Anhaga Guest

      Posted

      Try reducing by only 1 mg.  You may think it will be slower, but in fact you aren't getting anywhere with the larger reductions are you?  A smaller reduction may help you taper.  And when you reach 10 mg, or even before if you find you are still very sensitive to pred withdrawal, the dead slow taper may help.  

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