I had problems with sleep quality, fatigue. exercise intolerance and I rated my quality of life as poor when Actemra was started. Those things didn't improve until I was off Prednisone. All those things gradually improved the longer I was able to stay off prednisone.

The most amazing thing to me was how many prescription medications I was apparently taking for Prednisone side effects. In addition to tapering off Prednisone ... I was able to discontinue at least 5 additional medications. My doctor says she likes to deprescribe medications better than prescribing medications. I have also stopped several over-the-counter medications.

That’s a very good question.

My first round with Giant Cell Arteritis (GCA) and Polymyalgia Rheumatica (PMR) lasted from 2018 to 2021. Unfortunately, I experienced a relapse in 2024. After three failed attempts to taper prednisone at 7 mg, my rheumatologist recommended starting Actemra alongside a rapid taper from 15 mg of prednisone.

While my GCA/PMR symptoms remained unchanged and my quality of life was good during this period, the quick taper failed again at 7.5 mg. At that point, my rheumatologist suggested discontinuing Actemra. However, I believed the issue was with the tapering speed—not the medication itself—and asked to continue Actemra. Thankfully, he agreed.

I returned to 15 mg of prednisone and did a quick taper down to 10 mg. From there, I began a more gradual tapering plan: reducing by 1 mg per month with the goal of reaching 5 mg. I’ve now been at 9 mg for two weeks, and my quality of life is excellent.

It’s worth noting that I receive an Actemra infusion every four weeks. On one occasion, I had to wait five weeks between infusions, and many of my GCA/PMR symptoms returned during that final week (I was at 10 mg at the time). I also tend to experience minor symptoms during the last 2–3 days of each four-week cycle.

I wish you well in your battle with PMR, and I hope this post has answered some of your questions

I have been on Actemra infusions for 2.5 months. I have been on prednisone for PMR for 4 years. My doctor assumes I also have GCA which is why I'm now on Actemra but I have never been on the high prednisone dose you are on, so my case is different. I've started tapering down from 7 mg prednisone. I was on Kevzara for 8 months. My experience with both is similar so far. After my second Actemra infusion I definitely felt better, could do more, slept pretty well. I don't notice any mood changes. As far as how I feel, no problem. I'm just as concerned with what the drugs are doing to my body and on both of them I've had lab changes. Most significant is a rise in cholesterol and a white cell drop to below normal. My Rheumatologist thinks I should go on a statin for the cholesterol and the white cells indicate to me that my immune system is suppressed too much. On prednisone alone all my labs were normal except for LDL which was 134, 4 points above normal. Now I have 5 tests out of range and a doctor wanting me to add another drug. If Actemra allows me to sustain a prednisone taper I'll stick with it. Otherwise I think it has too many side effects and I'll stay with prednisone, which has not caused problems with its known possible side effects like blood pressure, blood sugar, weight, etc.