Actemra Infusions

I didn't start to feel that much better until I was completely off prednisone. I had to keep telling myself that Actemra was working and I didn't need Prednisone anymore. Actemra takes a while to work and doesn't kick in like prednisone. My improvement was gradual and it took me a year to get off Prednisone after Actemra was started.

Actemra must work because I haven't needed any Prednisone in more than 4 years. Considering I took Prednisone for 12 years to treat PMR ... Actemra is amazing and I never want to go back to Prednisone. I still have some pain but PMR is well controlled. I have other rheumatology problems but PMR isn't a problem as long as I do my monthly Actemra infusion.

Except for some mild side effects, I haven't had any side effects from Actemra.

I didn't start feeling any improvement until after my second infusion. That's when my energy levels came back. I have read that it can take quite some time for some individuals, to feel the results. I'm finding that I can taper my prednisone, without a flare up. I started my infusions in mid-January 2025 and I was taking 15 mg. Today, I am at 5 mg. As I mentioned, I still have some wrist aches and occasional, brief headaches. I have 3 good weeks a month. A few days before the infusion appt., my pain and tiredness increases. A few days after, I'm tired. I get a lot done in those three weeks!

Hi LinaXYL,
Just had to reach out to say that I have had about the same response as you to Actemra. I started monthly infusions in December 2024 but had to switch to weekly injections because my veins couldn’t handle the infusions. I have done well on injections but still have not seen dramatic improvement with my PMR symptoms. I still think that Actemra has been worthwhile because I have been able to successfully taper Prednisone without increasing my Sed rate and CRP. That was an ongoing problem before we added Actemra. I am now at 10 mg Prednisone and my inflammatory markers are finally normal. Previously I could only taper Prednisone .5 mg at a time and was stuck at 17 mg for 6 months. I pray that my PMR symptoms will improve more dramatically but I am thankful that it is allowing me to taper Prednisone. Prayers that we both see dramatic improvements in our PMR symptoms in the future! ❤️

Just documenting my experience (I am 81) and....PMR came on in Oct. 2023 after a severe sore throat and cold and by Nov. 2023 was started on 20mg prednisone by Gen. Practitioner. (Was on prednisone for 1 year + 2 months). Was trying to wean down 1 mg. every 4 weeks....which worked until I got to 6 mg. and had a flare up/relapse. I finally got to see a rheumatologist and he said, if we start the Actemra infusion - once a month (takes about 1 hr.), I can wean down 1mg of prednisone every 2 weeks - instead of 4 weeks....which I did until I was off of the prednisone entirely. I believe my side effects from prednisone were weight gain and sometimes insomnia. On Actemra (the dose is prescribed by weight) and I have noticed fluid retention in legs (haven't had ankles since Oct. 2025 - after two Actemra infusions) I've been in therapy for close to 4 months....I seem to be losing muscle or nerves in legs - hard to do stair steps without pulling myself up....using a cane so I don't fall (I have taken two hard falls since Dec.) I don't feel strong enough to keep me from falling. We are doing EMG on legs to find out if there is any muscle or nerve function damage. Was it the prednisone? Is it the Actemra infusion? No one knows. Hope to find out soon....as I am active...golfer, gardener, walker (usually 7,000-8,000 steps per day) I waddle now and I am unstable, so I use the cane.

I'm sorry to hear about your muscle loss and balance issues. I haven't experienced any of these symptoms. Has your GP suggested physical therapy? I hope you get answers. I know how hard it is to be out of commission, due to this disease, especially since you are active. I have read many posts on this forum of healthy and active individuals, who were stricken with PMR/GCA. Doesn't make sense, does it? I went from going 110 mph to 10 mph, last spring and summer. I feel like I'm up to 60 mph, now. But, I have to rest a lot more after 'busy' days.

I've been in therapy for approx. 2 months.