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Diagnosed two weeks ago with GCA and PMR

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pam48607
pam48607

After sudden onset leg muscle weakness and high fevers for 3 weeks requiring hospitalization, I finally have a diagnosis of GCA and PMR.   My rheumatologist started me on 60 mg. Prednisone a week ago, and since I thought I knew better than her and was afraid of too high a dose, I took only 40 mg. at first.   My symptoms came back with a vengeance, so now I am taking 60 for a month.   The plan is to wean off after that.   

    I have a specific question for this group:  my rheumatologist wants me to try Actemra along with the Prednisone, but when I did some research and saw all of the horrible side effects, I told her no right now.  Does anyone on this forum take or have taken this drug?  What was your experience with it; any bad side effects?   

    I have to be very cautious with any prescription drug because I have mercury toxicity, which causes all kinds of symptoms on its own.   I have to get all of my drugs compounded because I cannot tolerate any dyes, parfums, preservatives, etc. in regular drugs.   Just curious about this drug's effectiveness.

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  • sandy08116
    sandy08116 pam48607

    Posted

    Hi Pam - condolences!! I've had GCA only since December. Rheumatologist has mapped a maintenance plan for me which I stick to religiously! No making changes unless he has approved any. So far, it's been spot on, no straying from plan. The medications are Prednisone, Omeprazole (20mg) to prevent acid stomach, enteric-coated aspirin (100mg) to prevent heart attacks, daily, and Fosamax (70mg) weekly to increase bone mass. All have side-effects but I've got used to these - just annoying to someone who, for decades, was drug-free, illness-free. The good news is as dosage is reduced (I am on 7mg prednisone now), so will the side-effects. As I don't have PMR, I don't have any pain. 

    My GP prescribed multi-vitamins and said taking organic magnesium was ok. No diet changes advised, except eat fibre, fruit, nuts, drink milk. That's it. Now feeling 80% better, have blood tests done twice monthly and rheumatologist will reassess in a month's time. My advice is to understand what is happening, the purpose for the massive doses of steroids in the initial stages, the suppression of the immune system, the emergence of the body's defences produced by the adrenal glands - and giving the systems a chance to adapt to changes.

    My rheumatologist shares his case notes with me. This has helped me enormously.

    Chin up, all the best. Cheers 

    Sandy

     

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