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I started my Actemra infusions in January 2024. I chose the infusions. If I would have gone the shot route, my Medicare Part D would come into play. I would have had to deal with co-pays. I'm not even sure if my prescription plan would have covered them. I know that Kevzara is not approved in my plan. My Medicare and supplemental pay for the infusions, since they are administered in a medical setting. As far as bloodwork and frequency, your doctor should know what the manufacturer recommends, and include that in an order for the bloodwork. I double checked my required bloodwork and frequency yesterday, when I got my infusion. My rheumatologist followed the recommendations that the manufacturer recommends. As far as side effects, I have not had any. I have kept a health journal since June 2024, when I was first diagnosed with PMR/GCA. That's when I started on 60 mg. of Prednisone. I listen to my body and if something that doesn't seem right persists, I contact my rheumatologist. (The practice has texting set up. When I have questions/concerns, I send a text that is forwarded to the PA. I usually get a response the same day.)
Actemra has been a game changer for me. I've been able to step down my Prednisone from 15 mg. to 5 mg., without any flares. I feel so much better. I'm not 100%, but I'm 100% better than last summer. Good luck to you.
Replies to "I started my Actemra infusions in January 2024. I chose the infusions. If I would have..."
My experience is very similar to @nopnrose. I was diagnosed with PMR and GCA in late June 2024. I started with 60 mg prednisone, and about 6 weeks later I started taking weekly injections of Actemra. I have a Medicare Advantage plan that covers Actemra with prior approval.
I wouldn't say that taking Actemra requires constant blood tests. I have a rheumatology appointment every 3 months, and have a blood test before each one. The blood tests mainly monitor inflammation levels, but sometimes they check liver function and cholesterol levels. I haven't had any issues related to Actemra.
Actemra has allowed me to taper the prednisone to 2 mg per day. I'll drop down to 1 in 4 days. I hope to be through with prednisone in a month. Unlike @nopnrose, I would say I am at 100% now. I feel much better now than I have in several years. Getting below 3 mg per day of prednisone made a big difference in how I feel each day.
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Thank you for your post. It is extremely helpful. I was diagnosed with GCA in November 2024. I started on Actemra injections in March of this year. At that time I was down to 20mg of prednisone from 70 mg when it was first prescribed in early October of 2024 when it was suspected that I had CGA.
I am curious that you are still on 5mg of prednisone. My last taper was down to 2.5 mg three weeks ago and this past Sunday I stopped it all together as prescribed by my rheumatologist. I am feeling pretty lousy right now and I am suspecting that it is from the prednisone withdrawal. I am wondering if the plan is for you to stop prednisone altogether and if not, why you are continuing on the prednisone still.
I look forward to hearing back from you.
Thank you.