Any experience with Actemra - for my mom who is 90 years old

Hello @sellrs8, Welcome to Connect. I don't have any experience with Actemra but your mom is not alone and there are others here on Connect that do. While you wait for members with experience to respond, you might find it helpful to scan through the different discussions and comments from other members on the topic. Here's a link that lists the different discussions and comments on Actemra and GCA - https://connect.mayoclinic.org/search/discussions/?search=Actemra%20+GCA.

Have you been able to discuss your concerns and the possible side effects with your mom's care team?

Susan, I'm 71, and I've been taking weekly Actemra injections for almost a year. I haven't had any side effects other than a little fatigue the day after a few of the initial injections. It has a taken a year, but the Actemra has allowed me to taper the prednisone from 60 mg per day down to 2. I hope to be finished with prednisone in 5 weeks. The Actemra hasn't affected my blood pressure or kidney function. I have a rheumatologist appointment in a couple of weeks, and she has ordered blood tests before the appointment to check my inflammation levels and liver function. I have caught 2 colds in the past year, which is very unusual for me. I used to catch a cold every few years. I assume the combination of prednisone and Actemra have caused me to catch more colds.

I started 60mg prednisone Jan 2025, and monthly infusions of Actemra since February. The point of Actemra is to reduce GCA inflammation and to enventually get prednisone down to 0. At present, I am down to 15 mg prednisone, reducing 2.5 each month. I am 77 with controlled blood pressure. I have had 6 monthly Actemra infusion so far, with no side effects at all. Very easy before, during, and after the infusion, with no effect on blood pressure, no fatigue, nothing. On the other hand, the side effects of prednisone are numerous and unpleasant. So,for me, Actemra is great. Good luck to your mom.

Thank you so much for your reply! Your news is very encouraging. At first I was very hesitant about the drug, but I understand how hard it is to be on the prednisone. I am taking her for her first treatment on Monday. Best of luck to you and thank you again!

Thank you so much! She is going for her first treatment Monday. It will be a great relief to lower her does on the prednisone. It is so hard on the body. I recently got an unexplained rash, and they put me on a high dose of prednisone for five days, so I got to see what it was like first hand. Can't wait to be finished! I will you the best and so happy Actemra is working for you! Susan

Since I have never been diagnosed with GCA, I don't know how pertinent my experience with Actemra might be to you. Also, I was 64 years old at the time Actemra was started and I am now 70. I took Prednisone for 12 years to treat PMR. Actemra allowed me to taper off prednisone and stay off prednisone.

Relative to the side effects I experienced from long term prednisone ... Actemra side effects have been minimal for me. I'm still doing monthly Actemra infusions. My experience with long term Actemra has been mostly positive. I wouldn't wish for "long term" prednisone for anyone.

You will never know if Actemra will work unless you try it to see. If it doesn't work within 3 to 6 months, Actemra is easy to stop. For me, Actemra continues to work so there is no reason for me to stop doing my monthly Actemra infusions. I never want to take Prednisone again.

I think it’s worth a try. It takes a month or so to kick in but it has helped me with getting down to , now, 2 mg of prednisone. Also have not had a return of GCA symptoms. I’m very satisfied with this Actemra and in talking with medical community it is being considered as a first line treatment for conditions such as ours. BTW, I have kidney function issues stage 3 and it has not affected my GFR numbers and has brought down my SED rate to 4 (from 47) - and I’m 77 yo. ☺️