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DiscussionA month into my diagnosis with PMR
Polymyalgia Rheumatica (PMR) | Last Active: Nov 14, 2023 | Replies (57)Comment receiving replies
Replies to "I like your assessment that pmr is simply the body’s way of saying “more cortisol please.”..."
I might be the only person who thinks prednisone might have caused me to have PMR because of adrenal insufficiency and a low cortisol level. I was having extra stress from training hard for a long distance bicycle ride when PMR symptoms first started.
I was taking prednisone intermittently in high doses with other autoimmune problems. I was always able to taper off prednisone quickly in spite of starting doses between 60-100 mg. My ophthalmologist said I was "skilled" at tapering off prednisone because I did it frequently when being treated for uveitis.
I didn't realize that prednisone was suppressing my adrenal function. I felt like prednisone was "protecting me." Uveitis can cause vision loss. Severe back pain usually came with a flare of uveitis but that was diagnosed as reactive arthritis. Since prednisone relieved the back pain too, I self medicated with prednisone and didn't bother with seeing a rheumatologist.
I worried about what would happen if I didn't have any prednisone to take. That day arrived when I experienced pain in my shoulders and I didn't have any prednisone. My ophthalmologist was prescribing prednisone to me for uveitis but I didn't have uveitis. I couldn't ask my ophthalmologist for prednisone for shoulder pain. I wasn't seeing any other doctors at the time.
The shoulder pain spread and became widespread. When my wife had to help me get dressed, she called her primary care doctor. I was seen by my wife's primary care doctor because I didn't have one. One thing led to another but my wife's primary care doctor referred me to rheumatologist when I told her that I would be okay if she prescribed some prednisone to me. She just looked at me in disbelief.
A rheumatologist prescribed me some prednisone temporarily but she thought I was having a flare of reactive arthritis. She said reactive arthritis wasn't treated with prednisone even though I told her prednisone was what I always took.
Eventually PMR was diagnosed. My rheumatologist said I would need prednisone for a "long time" and not for a month or two. I was happy to have the prednisone but I tried to taper off prednisone in a month or two like I usually did. It was impossible for me to taper off prednisone and I was still taking prednisone 12 years later.
I had a chance encounter with someone who had an adrenal crisis from taking prednisone on a long term basis. She explained to me what prednisone did to the adrenals. She also explained the HPA axis and how it feels when your cortisol level is too low. She thought some of my "flares of PMR" were symptoms she experienced before her adrenal crisis. I did say my flares of PMR resulted in a "pain crisis." She understood why I would take more prednisone but she wasn't convinced I was having a PMR flare.
If you have managed to read all this, the following is the dialog I had on another online forum for chronic pain. Warning--it was a long discussion over many weeks.
https://www.healingwell.com/community/default.aspx?f=16&m=4073463