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Initial Dosage of Prednisone Impacts Long Term Recovery
Polymyalgia Rheumatica (PMR) | Last Active: Mar 29, 2023 | Replies (20)Comment receiving replies
Thanks. 60 mg of prednisone is mostly stopping my pain, and my last blood test showed "normal" inflammation, although the ESD was still a little on the high side.
You're right, the "name" given to my disease is not important in itself. It's the underlying treatment strategy is what really matters. Some autoimmune diseases apparently linger much longer than others so the tapering schedule might change if it turns out what I have is not PMR. The decision to use other biologics could also be affected.
Whatever I have, it definitely has some differences from a classic presentation of PMR:
1. Inflammation in structures at back of eye (causing double vision)
2. No stiffness or "gelling" in my shoulders or hips
3. Inflammation levels statistically far, far above those with PMR. By my calculations, using Gaussian statistics, I'm at something like a 1 in 250,000 level if it is PMR.
It sounds like you are using tocilizumab. I've heard it targets IL-6 and can really help, especially with tapering.
PS I've learned the hard way recently that "relying on what my doctor tells me" can be very dangerous to my well-being. Yes, they are technical experts, but the decisions and responsibilities are mine. They work for me.
Replies to "Thanks. 60 mg of prednisone is mostly stopping my pain, and my last blood test showed..."
Yes we must be very proactive about our own healthcare instead of placing blind trust in doctors.
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Yes ... I was offered Actemra (tocilizumab) for PMR after "all other treatment alternatives failed." That was the way it was worded on the approval request. I'm somewhat dismayed Actemra wasn't tried sooner.
I tried to taper off prednisone starting from a dose of 40 mg when PMR was first diagnosed. I had many setbacks but generally tapered slowly for more than 12 years. I never could get much lower than 15 mg.
Actemra was started after my rheumatologist said I too young to take prednisone for the rest of my life. My overall goal was to get off prednisone so I was willing to try anything.
I was able to taper off prednisone in less than a year after Actemra was started the first time. It would have been sooner except an endocrinologist needed to be consulted for adrenal insufficiency.
Another problem I encountered was my "history of" uveitis. As far as anyone knew, uveitis wasn't a problem anymore because it hadn't recurred for 15 years.
I was taking Actemra injections every two weeks and doing well when I tapered off prednisone the first time. Then I had a massive flare of panuveitis and 60 mg of prednisone was restarted and Actemra was stopped.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis
A uveitis specialist said Humira (adalimumab) was optimal treatment for uveitis. That might be true except Humira allowed all the pain to return. I got stuck on 15 mg of prednisone again along with Humira.
I'm back on Actemra but doing weekly injections instead of every 2 weeks. Now the uveitis specialist says the weekly injections of Actemra "seems to be working." I was able to taper off prednisone in less than 2 months the second time Actemra was started.
I have been off prednisone for nearly 3 years and haven't had many medical problems except for severe lumbar stenosis caused by "degenerative arthritis." I told the surgeon that I didn't know that I had a bad back because prednisone prevented the pain.
Except for my back, other medical problems related to long term prednisone use seem to be improving. Surgery on my back has been postponed. The large synovial cyst seems to have disappeared since Actemra was restarted. The synovial cyst was causing problems along with arthritis.
Synovitis is associated with both PMR and inflammatory arthritis. Enthesitis is commonly seen with inflammatory arthritis.
https://pubmed.ncbi.nlm.nih.gov/11824948/#:~:text=Conclusion%3A%20Synovitis%20was%20detected%20in,rare%20at%20any%20articular%20site.
Way too much "itis" if you ask me. With your inflammation markers, I would guess that is the problem.