Experiences with

Actemra

Should I continue on Actemra? Doctors couldn’t answer if I should continue Actemra. I called Genentech and asked: they advised that even though I have been taking Actemra for 2 years, a fast heartbeat is a serious side effect. Has anyone experienced this with Actemra?

I don’t know what to do….scared to death of Actemra.

My rheumatologist suggested a break with Actemra, since tests revealed the above 3 items that are questionable for continuing Actemra. My question is —should I increase my prednisone from 1.5? I don’t seem to have symptoms, just a little fatigued.

Wondering if anybody has had to transition from subcutaneous Actemra to intravenous Actemra? I’m currently on weekly subcutaneous while tapering prednisone, (down to 10 mg) and will soon need to get IV infusions because of changes to insurance. Were the side effects more pronounced with the IV?

Had my first Actemra injection last Wednesday. Last night I suddenly developed a sore throat, persistent headache and a heavy chest if I do too much. I know that some official patient info sheets for Actemra say you should contact your doctor if you develop a cold etc.

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?

Of course Actemra made it onto their list. They've agreed to cover its FDA-approved biosimilar, called Tyenne. As a GCA/ PMR sufferer currently stable (on weekly Actemra injections and 2mg pred) I am loathe to change anything.

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.

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.

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

Hello, on Wednesday I have an appointment with my Rheumy who insists I should take Actemra. I have been taking prednisone for 4 years, initially for PMRA and then for GCA.

Had my first injection of Tocilizumab/Actemra on 23/12/20 and injected once a fortnight VG, then zero Prednisolone since 21/8/23.stopped Actemra March 2024, all good until flare confirmed 9/7/24. CRP11 & ESR36. Back on 20mgm Prednisone.

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.

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).

I take an Actemra injection every ten days. Could it be a relapse of my GCA?

At what dose of prednisone does one stay at when taking Actemra when things seem to have settled, but has not? GCA . It's one question that the Rheumy has not answered yet? Bloods good, but feels like the flu, with shaking and severe weakness, tired and "no patience!!"

So new treatment plan is to commence Actemra injections weekly and to again taper swiftly down to 5 mg of Steroids. Can I please ask if there’s any difference in tapering with Actemra?

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