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How does your pain come back when decreasing dosage?
Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (57)Comment receiving replies
Long term use of Prednisone isn't well defined. Artificial intelligence says the following:
"While there is no single official definition, prednisone use for over 30 days is generally considered long-term. Other definitions use a threshold of longer than 3 weeks (21 days). The classification of "long-term" is primarily based on the duration over which significant side effects, such as adrenal gland suppression and an increased risk of infections, osteoporosis, and diabetes, become a concern."
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When Prednisone is used to treat PMR ... "long term" might be more than a year. In theory, PMR only lasts a year or two and "burns itself out." I think the time-frames for treating PMR are purposely vague because there aren't any precise answers. However, my prednisone side effects happened after my first dose.
I was treated with Prednisone for 12 years. I can't say PMR ever burned itself out. I had countless relapses no matter how slowly I tapered. The only thing a slow taper did for me was to keep me on Prednisone longer. There weren't many other options other than prednisone that were available when I was diagnosed.
When Actemra was tried, I tapered off Prednisone in about a year. Actemra actually keeps PMR in remission and has kept me off Prednisone for 5 years.
Replies to "@susanalka Long term use of Prednisone isn't well defined. Artificial intelligence says the following: "While there..."
@dadcue thanks, Mike. Great info. My PCP has never suggested Actemra or any other option for me. I’m at 2.5, down from 20mg in Dec ‘24. I saw her in June for a physical and the taper schedule seemed fine. Coincidentally, today she sent an email telling me I’ve been on prednisone long enough and asking how I’m doing.
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Addendum:
Now my medical records lists "long term" Actemra use as a problem. Fortunately, I don't seem to experience any of the serious side effects which came with long term prednisone use. More importantly, Actemra isn't known to cause adrenal suppression like Prednisone does. However, if you have recently transitioned from long-term prednisone to Actemra, it is important to be aware of a potential risk of adrenal insufficiency related to the prednisone taper. You may still need Prednisone for a long time after Actemra is initiated.
The Prednisone side effects I experienced didn't immediately go away after I was able to discontinue prednisone. An endocrinologist said some of my side effects from long term Prednisone use might be permanent. After being off Prednisone for almost 5 years, most of my prednisone side effects are gone or are improving. I have experienced some side effects from Actemra but nothing too severe.