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@jeff97

Some people with PMR and/or GCA are on prednisone for many years. If they are lucky, the disease burns itself out in one or two years, but that doesn't happen for everyone.

I have PMR and GCA, and I've been taking prednisone for a year, and Actemra for 10 months. If things go well for me, I'll be finished with prednisone in 2 more months. I expect to have to take Actemra for at least a few years.

It sounds like you are tapering much too fast. I was on 60 mg of prednisone for 6 weeks to get my GCA under control. I think most people with PMR stay at the initial dose for at least a month before starting to taper. I think you are still feeling the initial effects of the PMR, so it's hard to call it a flare if it was never fully controlled.

I feel very fortunate that I haven't had any pain at all from the PMR or GCA since I started treatment a year ago. I've had to take a lot of prednisone, but that gave me a good quality of life. Is there any chance you could get a prescription for Kevzara? That would control your inflammation if your doctor won't give you enough prednisone. It takes a couple of months for the Kevzara to take full effect however. Otherwise you might consider changing doctors so that you get the treatment you need to control your pain and inflammation.

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Replies to "Some people with PMR and/or GCA are on prednisone for many years. If they are lucky,..."

@jeff97 would you care to tell of your symptoms of GCA ? I had noticed my temple swelling where my glasses are on the left side and having headaches, pain and tenderness. Yesterday I noticed both sides was swelled and having a headache on both sides. I can see the artery/vein bulged out above my glasses

Thank you!
Your experience is helpful in coming to grips with this.
I am really struggling to understand it all.