Headaches from Actemra

I've been taking Actemra for more than 10 months, and I haven't had any headaches. Are you having any other symptoms? Is the Actemra to treat GCA? Are you getting infusions or taking injections? I take injections weekly.

I am taking it for gca and am injecting once a week. But I don't know where
the headaches are coming from that's why I posted.

Have you checked with your doctor? You could be having a relapse of the GCA. I have read that Actemra doesn't work for everyone, and that is possible to have a relapse even when you're taking Actemra.

Yes I have told them about the headaches but they don't seem concerned. Las Vegas has a terrible medical group here as almost anyone can get a license. I am stopping all meds that I see are not mandatory to see if I can narrow it down.

Be careful if you're planning to stop prednisone or Actemra. Stopping prednisone without tapering could make you really sick or kill you from adrenal issue, and stopping either prednisone or Actemra could cause a GCA flare or make the flare worse.

If you have any other symptoms of GCA such as fever, fatigue in your jaw muscles when chewing food, night sweats, or tender areas on your scalp or around your ears, I would try to get a second opinion from another doctor. If you have any vision problems, go to the emergency room.

Thank you for your cautions. I will not stop Actemra and my prednisone will be finished end of this week. The headaches have lessened so I'm fairly certain I can figure out what meds aren't playing well. Thank you all who posted.

Hello scottschooley
I am wondering what you mean by "my prednisone will be finished end of this week" does that mean your scrip has expired or that you believe you are going in remision? What level of Prednisone are you at etc.?

I finished my last week of prednisone 10 days ago. So far no aches or pains. I am still on Actemra injection once a week.

How long did it take to stop Prednisone after Actemra was started?

What Prednisone dose were you on when Actemra was started?

There is still a "recovery period" after Prednisone is stopped but that seems to depend on how long you were on Prednisone.

I still haven't figured out when Actemra gets stopped but I trust my rheumatologist to let me know when it is time. I ask at every visit though.

I started methoprednosone at 48 mg daily when first diagnosed with pmr/gca. Then would reduce 1 mg per week when I reached 10 mg daily methoprednosone my Dr. Put me on 8 mg daily prednisone then he reduced 1 mg per week when I got to 6mg daily we started the Actemra then we kept reducing 1 mg per week and now I have been off all prednisone for 10 days. I'm still taking the weekly injection of Actemra and Dr. Said this will be likely for two years.