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Feeling defeated
I guess I'm posting in an effort to reach out seeking some hope and optimism, because PMR is really getting me down. I'm only two months post diagnosis, (although I've had unexplained pain for a couple of years). I was started on 65mg of prednisone, which obliterated the pain, but I believe gave me a false sense of security. I have now tapered down to 20, which is not controlling the pain and I find myself pretty much debilitated. I am waiting for a referral appointment with a rheumatologist, and hope I can find some answers. I NEED to get better! Please forgive me for sounding like I'm complaining, but I absolutely need my mobility back. I also need a place to vent to those who are not directly involved in m life. My husband and I are caregivers for our grandson, who has autism. I am grieving for my father, who recently passed, and am responsible for his estate. I am also responsible for and have enduring power of attorney for my brother in law who has dementia. I have retained so much weight from the prednisone, I feel like a walking waterbed.
Add to that, some serious concerns about my husband's health, little things like breaking the glass on my stove top, my puppy chewing my glasses, and a flat tire are nothing. I also hold an elected office, with the election coming up this fall, I need to assess whether I will be able to fulfill my responsibilities should I be the successful candidate. So much on my shoulders, no wonder they hurt. Thanks for listening. I'd love to hear your success stories, and that there's life after PMR. I truly am feeling defeated, and need some hope right about now.
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Yes … I also needed to get down to 3 mg before my cortisol level was checked. After Actemra was started, I remember trying to convince myself that I didn’t need to take more prednisone. I wasn’t entirely convinced Actemra was working. I actually decided to get the “inevitable flare” over with so I started reducing by 1 mg per week until I reached 3mg
Being on 3 mg was uncharted territory for me. I figured Actemra was doing something or else I wouldn’t be on 3 mg of prednisone. My endocrinologist was encouraging me to stay on 3 mg of prednisone if I could until my cortisol level improved. Staying on 3mg wasn’t very easy to do. It wasn’t just pain. It was more about not feeling well along with dizziness and black out spells but I never actually passed out or anything.
After 6 months on 3 mg of prednisone my endocrinologist said my cortisol level was adequate. She said it would be safe to simply stop prednisone. Since 3 mg was a very low dose, I didn’t need to taper as long as my cortisol level was adequate. When I decided to stop prednisone I was told to take prednisone again “for any reason if I felt the need.”
A need arose shortly after I stopped prednisone the first time. I wound up on 60 mg of prednisone again for other reasons not related to PMR. My first attempt ended in failure and I truly felt defeated. However, I was convinced that Actemra worked for PMR.
My second attempt about a year later was more successful.