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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
You're very fortunate in getting results with tocilizumab (an excellent monoclonal) with few side effects. It's ideal for your condition (probably not PMR) because it sounds like you are really suffering what I like to refer to as diffuse autoimmune disease. This is where multi tissue and/or organ systems are effected (as you describe) versus organ or tissue specific autoimmune disease (e.g., psoriasis, colitis and PMR - large muscle groups being the specific organs). Check my website blogs#s 18, 19, 20.
Good luck
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It took time for me to get used to the idea of having PMR along with everything else. What confused me the most about PMR was that I couldn't taper off prednisone until 12 years later when tocilizumab (TCZ) was tried.
I could always taper off prednisone in a month or two for flares of uveitis. Prednisone quickly relieved the lower back pain that I associated with reactive arthritis and remission was achieved quickly.
Prednisone also helped trigeminal neuralgia (TN) despite what a neurologist said. After surgery was done to relieve the compression on my trigeminal nerve, a neurosurgeon said prednisone was likely helping the inflammation and swelling in the area near my brain stem. TN wasn't autoimmune but "systemic inflammation" made it worse. Yes ... there were multiple areas being attacked and the pain was diffuse but not every pain was autoimmune related.
In any case, TCZ was prescribed for PMR and I tapered off prednisone in a matter of months rather than years. However, TCZ didn't prevent a flare of uveitis. My ophthalmologist wants me on Humira (Adalimumab) but I choose to remain on TCZ. It was only one flare of uveitis and 60 mg of prednisone always takes care of that problem.
My primary care doctor is glad that I'm off prednisone. He was getting tired of treating all of the prednisone side effects. Even more things were unregulated while I was on chronic prednisone. Those side effects are diffuse too.