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Exercise is so important

Polymyalgia Rheumatica (PMR) | Last Active: Apr 14 9:29pm | Replies (27)

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Profile picture for Mike @dadcue

Same here!

For many of those 50 years, I had inflammatory arthritis where I took high doses of prednisone but I tapered off in a couple of weeks after every flare. I continued to jog and I routinely did 30 mile bicycle rides just for the fun of it. I didn't take prednisone for years like I did for PMR.

I don't know what was different about PMR except for the initial confusion caused by my prior medical history. There was a six month delay in starting prednisone for PMR until I said the pain was very similar but unlike any pain that I had ever experienced in the past. For inflammatory arthritis, long term treatment with Prednisone causes complications due to side effects. The side effects of Prednisone was the main reason for restricting Prednisone when it was thought I was having a flare of inflammatory arthritis.

After PMR was diagnosed, I needed to take prednisone for a long time. Maybe it was the combination of many things that made it so hard to stop Prednisone. My rheumatologist tried many things none of which worked out.

I don't blame anyone because PMR wasn't treated with a biologic until relatively recently. My rheumatologist finally said prednisone for the rest of my life would be a bad outcome. Actemra was called a last resort.

The primary expert on the other forum said I could take Prednisone safely for the rest of my life like she planned to do. When I left that forum, her rheumatologist in Italy started her on Actemra after she said doctors in the USA were breaking the rules. I wish I knew how her experience with Actemra turned out.

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Replies to "Same here! For many of those 50 years, I had inflammatory arthritis where I took high..."

As far as I know she's still taking Actemra with no problems and also taking a relatively low dose of prednisone (~7 mg).

I guess people with PMR can take Kevzara now if their PMR is resistant to standard treatment with prednisone? Just out of curiosity I tried to price Actemra and Kevzara a few months ago for what they would cost without insurance or financial assistance. At that time it looked like Actemra cost $65,000 per year, and Kevzara was $100,000. I think Actemra has come down now to around 55k due to other forms of Tocilzumab becoming available.