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No energy - who to see?

Polymyalgia Rheumatica (PMR) | Last Active: Jul 18 10:56pm | Replies (15)

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Duration of prednisone use is probably the single factor that most determines both the onset of side effects and recovery from side effects. I had many flares of other autoimmune conditions before PMR was diagnosed, I was younger but I needed high doses of prednisone. Going from 60 mg to zero in a month or two was routine for me back then. Except for "early onset" cataract formation, I didn't seem to have any prednisone side effects. My cataracts were permanent but easy for my ophthalmologist to fix.

After PMR was diagnosed all of that changed. I can only guess what might have happened if Actemra had been started sooner so that I could have tapered off Prednisone in less time.

I made many mistakes -- I have mentioned "exercise intolerance" as one of my first side effects after about a year of moderately high doses of prednisone. I took more prednisone so I could continue to exercise and not have so much pain and be so exhausted. I hit the proverbial wall with cardiovascular problems. I had left ventricular hypertrophy (LVH) and needed 3 blood pressure medications when I had no prior history of heart problems.

I suspect my exercise intolerance was the onset of adrenal insufficiency. My overall health and well being declined after that. I didn't go down without trying to taper off prednisone but it took me a long time. My personal recovery after stopping prednisone has been slower than I would have liked but at least I am heading in the right direction.

People speak about the "light at the end of the tunnel" when they get off prednisone. For me, I didn't like how I felt at the end of the tunnel. I wanted to get back to where I was when I entered the tunnel. Some people go through shorter tunnels ... I guess.

Time for me to go to my exercise class.

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Replies to "Duration of prednisone use is probably the single factor that most determines both the onset of..."

I had a big cumulative load of prednisone over the past year. I had 3 grams of methylprednisolone from IVs in the first 3 days of treatment, so that was a lot to start with. Then 60 mg per day for 6 weeks, etc. With more use of Actemra and Kevzara, hopefully people are taking less prednisone during their treatment.