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Kevzara (sarilumab) to treat PMR

Polymyalgia Rheumatica (PMR) | Last Active: Aug 24 6:34am | Replies (162)

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@hfoster

Thank you. Same to you. I remember how awful it was in the first few weeks and months. It sounds like you've gotten to a good Dr. early. What a difference that makes. It took me 8 months and lots of misdiagnoses along with 6 doctors before I started treatment. As you are researching, check out this site: https://healthunlocked.com/pmrgcauk
It has been really helpful. Also, there is a book on PMR that has a good summary of research and experiences: Kate Gilbert's Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Will be interested to hear how your PET scan goes. That was never offered to me but wondering if I should get it to confirm my diagnosis and ensure I'm getting the proper treatment. It does get so much better once you start Prednisone. Hope you get some relief soon.

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Replies to "Thank you. Same to you. I remember how awful it was in the first few weeks..."

Thanks @hfoster - yes I’m thankful to have been able to get into a Rheumatologist soon after I saw my gp. She happened to be a friend of a friend and squeezed me in. I tried Physio’s first for weeks thinking it was sports related somehow until the pain continues to get worse and travel to my neck and shoulders. It looks like I may be waiting for a few weeks for the PET scan so can’t go on prednisone until I have had that done. I’ll let you know how that goes. It’s expensive but my specialist said if it was her she would certainly rule everything else out first. Meanwhile the pain progresses. I’m trying to be thankful it’s not something more sinister that I have been diagnosed with. I’ve realised you have to be your own health advocate and research and get as much info as you can and push the drs. I had one gp say just get a steroid injection and that should fix your pain. ‘It’s not uncommon to suddenly have that kind of pain.’ How wrong she was. I hope you can figure it out and get the answers you need.