I continue to be amazed at the knowledge I have learned from some of you (PMRpro, DorsetLady, Kendrew, SheffieldJane, just to name a few.) I have learned so much about a disease I never heard of before. I’m only sorry I didn’t find you til I was 3 months in to GCA. I followed my doctors orders exactly and relapsed at 10 mg. I think that might have not happened if I knew about you. I was so happy reducing prednisone so quickly until it all came crashing down.
I’m angry at all these doctors who seem to know so little. I realize they are only human and can’t be all knowing but at times I suffered needlessly because of their ignorance. I was tired of rheumatologist telling me many of my side effects were not from prednisone, GCA or Actemra only to find out on here that many others suffered the same things.
Anyway, I have learned so much and still have a long way ahead.
Merry Christmas to all of you!
Written by
nallufl24
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I do feel a bit sorry for doctors - they are expected to know things without even trying on the t-shirt. But they really shouldn't be so emphatic about what is due to what unless they REALLY know.
I so agree. I hear people coming on to this forum having just been diagnosed with PMR and being told to reduce really quickly in spite of being in pain and you know they are going to be in agony just because we trust out doctors to give us correct information.
Thank you for putting into words what we are all thinking.I too am grateful for all the advice on here and I'm sure my gratitude is echoed by many more.
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PMR Tapering
Covid Sick Day Rules
Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
Is it PMR pain if only right side
hallo
