GCA Biopsy while on prednisone

I'm very happy with the Actemra infusion.

I "progressed" to a monthly infusion. I started with an Actemra injection every 2 weeks. I was able to taper off prednisone but it took me an entire year the first time to get to zero prednisone. I was only off prednisone for about a week before something else happened. I had to go back on 60 mg of prednisone again.

It was only a temporary setback but Actemra was stopped for 3 months while a different biologic was tried. Ultimately, I was switched back to Actemra except I did weekly injections instead of every two weeks. I tapered off prednisone in two months the second time.

I have taken Actemra a total of 4 years except for a period of time when Actemra wasn't available during Covid. Actemra supplies were being diverted to treat seriously ill Covid patients so that was good. However, I had a relapse and needed prednisone again.

When supplies of Actemra improved, I was given an infusion of Actemra. I had a great response to the Actemra infusion. I was off prednisone for the third time before I was given my second infusion of Actemra.

A decision was made to let me stay on a monthly infusion. My rheumatologist has more control over what dose of Actemra I get. All I do is show up for the infusion every four weeks although sometimes I go five weeks between infusions.

The infusion works extremely well for me. Someday I hope to be able to stop Actemra but my rheumatologist doesn't think it would be a good idea.

Your response is very helpful, I was very afraid to take Actemra, side effects really scared me. But I really have no choice, I’m told it’s not good to stay on prednisone too long. Why is it so hard to get off prednisone? Did you have a reoccurrence of GCA? Were you hospitalized? Sorry for all the questions, but I have so many regarding this disease, I spent 4 days in the hospital, at first they thought I had a mini stroke, but a sharp Ophthalmologist said test for GCA & she was right.

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.