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PMR - What do you wish you had known . . .
Each of us has been on a journey with a disease that is not well understood, common but not identical symptoms and the steroid treatment is scary and problematic with its own side effects.
What is the one or two things you wish you had known early on that helped you put the pieces together and helped you better understand what is going on with you and your body.
Please share so we can learn from each other.
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@wendybfrompgbc ask your dr abt biologics….Kevzara got me off prednisone and I have no side effects from kevzara 🙏
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2 Reactions@wendybfrompgbc I hit 6 years this Spring and I'm not seeing an end. I went to a major teaching hospital out of state and they Dx GCA. I am totally asymptomatic.
You might want to talk with your doctor about PMR taking so long to blow over. PMR is suppose to burn out in less than 5 years. They did a PET scan to find my GCA since I had no temporal symptoms.
@tweetypie13
IL-6 inhibitors do offer a ray of hope for people who have used prednisone for a long time to treat PMR and GCA. Actemra (tocilizumab) allowed me to taper off after 12 years of prednisone. I have to admit that 12 years of prednisone with all of my PMR relapses while taking prednisone were making me depressed. It wasn't very helpful when I was told that prednisone was the best and only option for PMR and that it was okay for me to take prednisone for the rest of my life. My rheumatologist believed otherwise.
I have now been on Actemra for 7 years and I feel much better without any relapses and all of the agonizing pain every time I relapsed. I still have some "tolerable" pain but I don't expect to have no pain. My side effects from Actemra are minimal if any. I have osteoarthritis so that explains much of my lingering pain.
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