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Had PMR for 4 years. When does it end?

Posted , 10 users are following.

jenny90481
jenny90481

Hello,

Could you please give me some advise?

I am 56 and diagnosed with PMR and GCA four years ago no blood markers but a ultra sound picked up the GCA with headaches. Fortunately the GCA burned out 2 years ago. I managed to get down to 7mgs and after that the pain and stiffness was back.

I came down really slow and at 2mg couldn't walk and have terrible stiffness. Unable to get an appointment with my rhuemy and the rhuemy nurses have not called back. My doctor will not increase my steroids without rhuemy consent!

So I am on 2mg and unable to function. Should I self Medicate and at what dose? Or perhaps this is steroids withdrawal and I should see it out? Also I have tender spots on my scalp is this something to be worried about? (GCA)

Jenny

0 likes, 4 replies

4 Replies

  • mary19068
    mary19068 jenny90481

    Posted

    Hi jenny90481

    When i got down to 2mg on my taper i continued to taper, but i was in discussion with my doctor and i had communication with my rheumy. As GCA is involved in your case i would definitely wait to discuss your situation with your rheumy. Can you not ask your doctor to arrange an appointment with your rheumy?...or in the meantime keep contacting rheumy nurses or email your rheumy secretary....i am willing those nurses to call you as you are in a bit of a dilema at the moment.....kind thoughts and good wishes..

  • MKSimpson95
    MKSimpson95 jenny90481

    Posted

    Hi- I too would ask doc to intercede with nurses at rhuemy.  Yes I believe scalp is GCA related too.

    Sending good luck to you!

    /mk

  • EileenH
    EileenH jenny90481

    Posted

    You seem to have fairly duff set of a medical team!!! 

    It definitely sounds as if PMR is part of your GCA (so to speak). PMR requires a median duration of pred management of 5.9 years:

    https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

    Keep plugging away at the rheumy access if your GP won't help. But if the scalp discomfort gets worse I would turn up at the rheumatology department. Just in case.

  • amkoffee
    amkoffee jenny90481

    Posted

    My GP did the same thing to me that yours is doing to you. My GP diagnosed me. He's the one who did all the blood work found that I had the elevated inflammation markers but refuse to treat it. He made me wait 4 months so I could see my rheumatologist. I think that was just torturing uncalled for.

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