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Is My Rheumy Nuts ?

Posted , 9 users are following.

rocketman42
rocketman42

I see a rheumy at the well known hospital ranked 1st in the U.S. for Orthopedics and Rheumatology. 

Diagnosed with PMR about 18 months ago. Started on 15 good results and got down to 10. Took a trip to Europe and had to go back to 15. Stayed there for a while until I had another medical problem and 15 no longer worked so am now up to 21 with fair results. Recent ESR and CRP are normal.

Saw my rheumy for a follow-up visit today and she wants me to get off the prednisone since she thinks I'm on it too long and is concerned about the effects and that I am still not feeling great. ( fatigued, tightness in muscles of pelvic girdle making it difficult to walk for a prolonged time, spasms of the muscles, shortness of breath on exertion, lightheaded ). Sending me for another bone density test. First one was average for a 65 y.o. male.

Suggested starting me on a bisphosphonate to halt osteoporosis and a biologic ACTEMRA to help get off the prednisone.

Needless to say I'm upset over the latest turn of events since the last thing in the world I want is more medication.

At the moment I am thinking of looking for a new rheumy. Am I nuts or what ?

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  • wannie
    wannie rocketman42

    Posted

    No Scott, I am very certain you are not nuts! lol

    If you still have pain and inflammation you should not be taken off pred.

    Secondly run away from biophsophonates, class action suits around the world.

    They are designed to protect your bones, but in say 10 yrs time, they actually

    make your bones more susceptible to breaking, the very thing that it was designed to do, it contradicts itself in 10 yrs . Miners working in mines were often diagnosed

    with brittle bones from biophosphonates they  inhaled in the mines---and one dose

    of biophosphonates ,it is in your system forever, it never leaves your system.

    I wish I had known b4 I took any(I refuse to take it now) Decision is of course yours

    but please research it first. 

    Actemra is used to treat rheumatoid arthritis and reduce inflammation and GCA

    But I have not heard anyone use it to treat PMR. 

    If it were me, I would look for a ne rheumy, second opinions don't hurt.

    Your body---your life.

    Best of luck and pls be well.

    • EileenH
      EileenH wannie

      Posted

      It doesn't take 10 years - for some people even a couple of years was enough to lead to the "atypical femoral fractures".

      Actemra is approved for use in GCA - and quite a few rheumies are starting to use it in PMR when they can get funding. There are a few pilot studies ongoing - and there is logic: PMR and GCA are very possibly just different points of a spectrum of symptoms.

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