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GCA Biopsy while on prednisone

Polymyalgia Rheumatica (PMR) | Last Active: Oct 22, 2023 | Replies (14)

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@dadcue

I took prednisone for more than 30 years for a variety of autoimmune problems but GCA was never one of those problems. Perhaps I was never diagnosed with GCA because I took so much prednisone ... I don't know.

I had another autoimmune problem called uveitis which can also cause vision loss. My ophthalmologist never hesitated to prescribe a high dose of prednisone.

Uveitis was easy to diagnose compared to GCA. A quick look inside my eye was all that was needed to see all the inflammation. I've had approximately 30 confirmed flares of uveitis. The fortunate thing about the uveitis I had was that it was "steroid responsive" to a high dose of prednisone for a short period of time. Sometimes 60 mg up to 100 mg of prednisone on a short term basis was great for uveitis. I couldn't tolerate those high doses of prednisone for very long and could easily taper back to zero prednisone.

I'm not sure PMR and/or GCA responds to prednisone that well. The pain is mostly relieved but remission takes a long time to happen. With the uveitis flares I had, remission was achieved within a month or two.

Practically all my flares of uveitis happened during the 15 years before PMR was diagnosed. I never needed to take prednisone long term. I didn't have any of the harmful effects from prednisone except for cataracts at the age of 40 during the 15 years before PMR was diagnosed.

Everything changed after PMR was diagnosed. I started taking prednisone daily and for a very long time ... 13 years. The flares of uveitis stopped but that was the only good thing that happened during my 13 years of taking prednisone for PMR.

The first year or two of prednisone daily wasn't that bad as far as PMR was concerned, Unfortunately, I subsequently went through 10+ years with one medical complication after another including being hospitalized in an intensive care unit. Emergency room visits were becoming more and more frequent.

I'm not sure everything was caused by prednisone. However, my doctors kept telling me prednisone was contributing to all of the problems. My overall health and well being was deteriorating but it was impossible for me to taper off prednisone until Actemra was tried.

At first, I was frightened to take Actemra too. My rheumatologist didn't make any guarantees that it would work. He just said if it doesn't work I could stop taking it at any time. He said Actemra had potential side effects but when he reviewed my past medical history, he didn't think Actemra would cause anything worse than I had already experienced on prednisone. He also said, Actemra might be my best chance of ever getting off prednisone but there was no way of knowing unless I was willing to try Actemra.

My thought was that I had nothing to lose by trying Actemra since I could stop taking it if it didn't work. I didn't expect that I would ever be able to stop prednisone for a variety of reasons.

Today I can say for me personally, Actemra hasn't caused any serious side effects. More importantly, I have been off prednisone for almost 3 years and my quality of life is improving. Not everyone will experience this but that has been my experience with Actemra.

When Actemra allowed me to get off prednisone the first time, I had a massive flare of uveitis ... not GCA. I was referred to a uveitis specialist who didn't think Actemra was "optimal treatment" for uveitis. A different biologic called Humira was tried. but Humira didn't work for PMR. That prompted my rheumatologist to say it would be impossible to treat both conditions at the same time.

Increasing my dose of Actemra has worked well for all my autoimmune conditions. Being off prednisone makes me feel so much better.

I would be happy to try and answer any questions you have. I should also say I won't know many of the answers to your questions.

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Replies to "I took prednisone for more than 30 years for a variety of autoimmune problems but GCA..."

Thank you so much, very helpful.