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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
Hello~I'm so happy to have found this group. When I lost the sight in my left eye and was then diagnosed with GCA in 2019, I was at such a loss for information of any kind. Was this group around in 2019? I found a support group for PMR/GCA in England under Health Unlocked, and today one of the members steered me here; I'm thrilled. I'm now down to 3 mg per day from 80 mg of methylprednisolone plus Actemra initially and could never get below 40 mg until the first of this years. So far so good except for the usual fatigue and stamina issues. Of course, 3 years of prednisone has left its mark but it also saved my sight. I considered the side effects part of the treatment~! So happy to have found you....💞(my trademark)
Replies to "Hello~I'm so happy to have found this group. When I lost the sight in my left..."
Hi @grammy82, so glad you found us. I think the PMR/GCA group at Mayo Clinic Connect is particularly robust. I found it by Googling PMR and GCA shortly after my diagnosis. Before I was diagnosed with Giant Cell Arteritis, I was very fatigued. That was due to anemia, caused by the disease. It's called the anemia of chronic inflammation. I was prescribed 40 mg of prednisone a day in the beginning and it resolved the anemia. The prednisone gave me lots of energy and made it difficult to sleep at night. I've been off it now for about seven months. I have enough energy to get through the day, but I don't push myself to do everything I possibly can. One thing I've learned from being in this group is that those who push themselves too hard can get flareups.
My mother-in-law was diagnosed with GCA in her late 80s. It did deplete her. She went into a nursing home, but became President of the Resident's Council and served for many years. She told me that living there was the experience of her lifetime. She died two months short of her 100th birthday. There is lots of life to be lived after GCA. I wish you the best.
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Welcome @grammy82, I'm happy to hear you found Connect also and it's great to hear your treatment saved your eyesight. I'm not sure exactly when Connect was started but I think it may have been 2011. I was happy to have found it in 2016 when searching for neuropathy information. The PMR and GCA discussions came in handy during my second flare of PMR in 2016 also.
Health Unlocked also has a wealth of information and was quite helpful for me when I was tapering off of prednisone. I never developed GCA but was always watching for possible symptoms.
We recently updated the search function on Connect so if you are looking for specific topics or trying to find questions, give it a try at the top of every Connect page. There is also a discussion search function on the Connect home page where you can click the search just above the list of discussions highlighted and search just for discussions containing a keyword.
@tsc and others might have some suggestions or tips for the fatigue and stamina issues associated with treatments for GCA. Is the fatigue or stamina the main side effects you have now?