PMR/GCA

Posted by docm @docmeehan, May 8 6:19am

Hello everyone, I am dealing with PMR/GCA and have experienced some brief episodes of double vision which my Ophthamologist says are inconsequential. I am slowly tapering the prednisone according to my own schedule. My question is have any of you ever actually experienced a stroke or heart attack related to your PMR/GCA? I'm just curious. I have been dealing with this disease for eight months and I really feel for those of you who have been at it for even longer than that.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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Hi @tarafergusongould, I’m sorry to hear that you’re having to go through this horrible experience. May I ask what tapering schedule you are on and do you still experience pain related to the GCA as you’re in the tapering process? I get very frustrated with having a few days that are relatively pain free and then seem to regress to jaw or head pain for awhile. I still have episodes of visual auras sometimes.
I have been involved in this process for 10 months and I am 80 years old.
I wish for only the best outcome for you!
Thank you for any help or advice you can offer.

Doc

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Doc, I have been under treatment for GCA and PMR for 12 months. I started at 60 mg of prednisone per day, and stayed there for 6 weeks. I have tapered over the past year to get down to 2 mg per day. I hope to be finished with prednisone in about 5 weeks. I have also been taking weekly Actemra injections for 10 months, and I will continue to take them for at least a few more years (I assume). I haven't had any pain or symptoms at all from the GCA or PMR during the past year. I think that is from the combination of prednisone and Actemra and a relatively slow taper. I can provide more information about my taper if you're interested. I'm 71 years old.

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