← Return to Actemra Infusions

Discussion

Actemra Infusions

Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (16)

Comment receiving replies
@verversannjudy

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.

Jump to this post


Replies to "Just documenting my experience (I am 81) and....PMR came on in Oct. 2023 after a severe..."

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.