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Timing of taking prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Jun 16 6:20am | Replies (45)

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@saltyg

Interesting I have had chronic uveitis associated to Ankylosing Spondylitis and could only control it with Medrol packs. This was prior to AS dx and starting biologics. Now back on prednisone for PMR. ☹️

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Replies to "Interesting I have had chronic uveitis associated to Ankylosing Spondylitis and could only control it with..."

We should compare notes sometime. My uveitis was "steroid responsive." It was also called "severe" and "aggressive." My ophthalmologist didn't hesitate starting 60 mg of prednisone as soon as I reported another flare of uveitis. He just wanted to verify it was autoimmune uveitis and not caused by an infection or something else.

The steroid eye drops and low dose prednisone didn't work for my early flares of uveitis. I would just work my way up to 100 mg of prednisone with the fear of going blind in my left eye. For some reason my right eye was spared the whole ordeal. I only had "mild flares" in my right eye and not very often. My left eye has had severe flares more than 30 times -- once or twice per year for 20 years.

When I was diagnosed with PMR, I stopped having flares of uveitis. Taking prednisone daily seemed to prevent uveitis. The problem was that I needed 30 to 40 mg daily for nearly 10 years before I was able to gradually maintain things with 15 mg of prednisone. I was a long way from getting down off prednisone I took prednisone daily for a total of 13 years to treat PMR. I personally think it was a combination of many things.

My rheumatologist decided that I was "too young" to take prednisone for the rest of my life. My first biologic ever was Actemra just 4 years ago just to see if it would work for PMR. It worked fantastic for PMR but as soon as I tapered off prednisone I had a massive flare of uveitis. My ophthalmologist wanted me on Humira which didn't seem to work for PMR because I needed to stay on 15 mg of prednisone again.

Things turned out when I was switched back to Actemra with more frequent injections. I have also done monthly infusions of Actemra. So far, everything as been well controlled. I have been off prednisone for the past 3 years.