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← Return to Kevzara (sarilumab) to treat PMR
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Kevzara (sarilumab) to treat PMR
Polymyalgia Rheumatica (PMR) | Last Active: Apr 4 7:55pm | Replies (156)Comment receiving replies
Just 10 days from reducing the prednisone 2.5 milligrams I have had a flare! Dr thinks the PMR might has progressed to GCA. I had the worst headache in both temples. Now planning on doing the biopsy as I would never want to risk vision loss. I knew ahead of time to watch carefully for headaches. Although the Rheumatologist never warned me. Anyway just sharing with you all cause being and staying informed is key along with being your own advocate. I feel great going back up to 15 mg on the Prednisone. It’s such a great drug. I’m feeling on top of the world after having one of the worst headache of my life. Just a day ago it was scary! I will let you know of any new med’s she might put me on. Of course I am going to research very thoroughly. Hang in there we can make it if we try! Staying positive and still working really is what keeps me going, trying to look beyond this.
Replies to "Just 10 days from reducing the prednisone 2.5 milligrams I have had a flare! Dr thinks..."
I'm glad to hear they are planning the biopsy, the loss is permanent, as I had to experience. It is best to know for sure because we certainly have to be our own advocates. I'd never even heard of GCA until it was too late. My best to you. I've gone from 80mg per day three years ago to 3mg and Actemra and feel good. I paint and have managed very well. You deal with it and try to do the best you can. So glad you are educating yourself. I was told I had the flu for nine months.💞
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I am so sorry to here your real life experience its terrible. You have all i thoughts and strengh please get better.
The doctors are acting weird in the UK whete PMR and CGA cases have gone crazy as well as other nerve inflamation.
Its really scary and the doctors seem to swerve the question when asked.