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Other than the rheumatologist who diagnosed my PMR and prescribed prednisone I’ve never received any useful medical advice from any of the other 5 rheumatologists I’ve seen.
I canceled my last appointment and decided not to waste my time or theirs. I now rely exclusively on advice from two support groups and my own body awareness and intuition.
I wish it were otherwise but it just isn’t.
Replies to "Other than the rheumatologist who diagnosed my PMR and prescribed prednisone I’ve never received any useful..."
I actually think that may be the point of this disease. That and (for me) learning to shift gears and priorities to actually take care of this gift of life.
I'm just wondering what you would consider to be "useful medical advice." The standard of care for PMR is prednisone and wait for PMR to burn itself out. After remission is achieved, a slow taper off Prednisone is the standard advice. My rheumatologist "encouraged" me to taper off prednisone as soon as possible to minimize the risk of long term side effects.
People probably don't need more medical advice than this except when people are unable to taper off prednisone in a timely fashion. All the side effects from my long term prednisone use were handled by my primary care doctor. My doctors deferred to an ophthalmologist for cataracts, high intraocular pressures and other problems with my eyes.
My rheumatology visits during my 12 years mostly consisted of evaluating my pain and inflammation levels and checking on how much prednisone I was taking.
I needed a ton of prednisone but I always had a prescription when I needed more. I was grateful for all the encouragement to taper off prednisone as soon as I could and 12 years was too long to be on prednisone daily. Other than trying all of the standard steroid sparing medications, there wasn't much more that could be done under the circumstances.
After some initial confusion and a personality conflict with my first rheumatologist, a second rheumatologist diagnosed me with PMR. After that I had the same rhematologist for 12 years. She had empathy for my pain and understood how difficult it was for me to taper off prednisone. I didn't expect more than that.
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I feel very fortunate to deal with my rheumatologist and his PA. They helped me through a very difficult time when I almost lost my vision from GCA. They prescribed Actemra to help taper off prednisone more quickly, and gave me a taper plan that has worked well so far. Also they're easy to contact if I need anything. I can call or email their office, and they have an off-hours emergency number that is always staffed. They have always gotten back in touch with me quickly whenever I had any problems or questions.