Experiences with

Actemra

Now it’s 2025 and I’m on my second bout of GCA , this time with Actemra . It’s been over two years now and I’m trying to decide what to do. For the last 8 months, I’ve been on 1.5 mg prednisone and Actemra biweekly. Should I be tapering to 0 pred?

The first time was seven hours after an Actemra injection. The other three episodes were more random. All occuring out of the blue on uneventful days. Do you think the Actemra might be the culprit? Of note, I was on Actemra about eight months before I noticed a break in the headaches.

Is scalp pain a sign of a flare with GCA?

I’m off Prednisone and just doing weekly injections of Actemra. I recently had the scalp pain that’s been gone for some time. Has anyone experienced this? The ER doctor put me on 50 mg Prednisone for 5 days and pain went away.

Curious as to what others have used for tapering plans once on Actemra? I searched but couldn't find taper with Actemra. Thanks in advance. Happy Holidays

We stretched the Actemra shots to fortnightly but they have dropped to 0.4 and doc is concerned.

My doctor wants to start me on Actemra infusions. I am leary of biological. Does anyone have any experience with this treatment. Also is it possible to just stay on 10mg of prednisone long term without major side effects? Thanks for all the help everyone here gives freely.

It’s been 5 weeks since last Actemra and bloods show no increase in inflammation . What do you think about stopping Actemra and going with pred alone? 2. Rheumatologist is OK with putting Actemra on hold and going with pred alone (she loves Actemra).

This seems to be worse than when I was on Actemra and I am wondering if it would help to go back on it. Just wondered if any of you on Actemra noticed you felt less fatigued once you started it.

Hi, I am PMR/GCA patient in US taking Actemra so I realize I may not receive a big response but thought I would give it a try. I am currently taking 30 mg prednisone/day and a monthly infusion of Actemra-3rd month. I started at 60mg/ day of prednisone back in August, 2024.

PMR treated with biologic Actemra in US. Any of you have tried this one? My doctor is inclined in me starting this medication. I was able to stop completely Prednisone, only to begin again three months later. I had normal ESR and CRP for two years. Now it’s elevated again, though not a lot.

PMR treated with biologic Actemra in US. Any of you have tried this one? My doctor is inclined in me starting this medication. I was able to stop completely Prednisone, only to begin again three months later. I had normal ESR and CRP for two years. Now it’s elevated again, though not a lot.

Is this GCA or side effects of the Actemra and steroids? I’ve had headaches and inflammation in both knees and hands with neck and shoulder pain.

(I am also on Actemra, which seems to be working well, in my case.) Should I stop the Actemra while I am sick? And just hold steady with the 2 mg. prednisone? Thanks for this amazing resource. xx

Last time I posted I had had a relapse of the GCA after having to pause the Actemra infusions due to pneumonia and sepsis. I am now back on Actemra (had my first infusion last month) and back down to 15 mg prednisone from the increase to 30 mg when I had the relapse.

rheumatologist wants me to put me on Actemra since I’m not tolerating prednisone that well, what has everyone’s experience been?

Hi, I am GCA/PMR patient and currently taking 35mg prednisone and Actemra once a month. I have just tested negative for Covid after 5 days of testing positive. I am experiencing muscle aches in thighs and slight headache and eye ache.

Back on Pred and Actemra. At least we know where it is now, as I’ve mostly had constitutional symptoms. I have 2 questions: what us the usual monitoring for disease activity and aortic aneurysms? And, with aortic involvement is it sensible to be followed by someone with vascular expertise?

When I tried to stop before, my symptoms came back within 6 weeks and I started up on Actemra again. That was a year ago so I’m trying again.

Hi everyone, just wanted to give an update since my last post about having to,pause Actemra after having severe sepsis. Had appointment with rheumatologist this past week.