Acterma infusions for GCA

I was diagnosed with GAC in 2020. My inflammation numbers were over 300. I started Actemra injections in January of that year. I qualified for medicine assistance and started giving myself injections. I had read normally these injections are tapered off after two years. I asked about stopping the injections. At this point my inflammation number was 2 and had been for quite some time. I read that normal for GCA is 0 to 20. My doctor’s reply was I should stay on it because of my age. I started the injections when I was 80 and now I am 87. In April of this year I received a letter from my insurance company stating I was being denied help with my medicine. It stated my doctor didn’t follow a list of procedures for diagnosing GCA. Therefore, I didn’t have GCA and didn’t need the medicine. I am now experiencing problems with my fingers tingling and sometimes feeling numb. I read that this a sign that GCA is coming back. Has anyone experienced anything like this happening? I filed for a reconsideration of their decision and have not heard anything so far. I have made numerous calls and rarely receive a call back.

@spinella If you are in US and have Medicare part b pays for monthly infusions with supplemental insurance paying balance. Check with doctor about infusions. Good luck.

Sorry for the delayed response as I just saw this. I have been on Rinvoq for GCA since April 2026. GCA symptoms started in Jan 2025 for me. I have had 3 relapses since then. I have tried Actemra and Methotrexate but had bad side affects from them. My Rheumatologist suggested I try Rinvoq. Insurance does not pay for it. The only side affect I have from Rinvoq right now is I tire easily. Other than that it has been helping me be able to cut back on the Prednisone. This is the lowest prednisone dosage I have been on since I started this journey. I did get down to 6.5 mg prednisone but I could feel the temple pain coming back so I just recently went back up to 7mg to see if the temple pain would go away. 7mg is still the lowest dosage of prednisone I have been able to get to. This disease affects everyone differently. I am still struggling with it. My hope is that all of us with this disease can get into remission and stay there. Good luck to you all. Please keep us posted on how you are doing with the different medications.

@eaod I was on prednisone and switched to Actemra both of which for approximately a year and a half unfortunately I need to stop the camera because my blood counts were extremely low. Within seven weeks of stopping both prednisone and Actemra, my headaches were back. I’m now on 20 mg of prednisone again and finally without headache pain again but do not want to stay on prednisone at this dose. Curious if the rinvoq had any effect on your blood count.

So far all my blood work has been in the normal range which I am thankful for. I had bloodwork done a month or so before I started Rinvoq. Then i had bloodwork done mid may and all was normal. I believe we will do another round of blood work in September. Fingers crossed it comes out normal. I am thankful that we might have finally found something that will get me down to a reasonable prednisone dosage. I dont think I will be able to get off prednisone anytime soon but if I can keep the dosage under 10mg daily I consider that a win. If you decide to try rinvoq let me know how you do.

@eaod What side affects did you have when you were on the Actemra?

The side affect I had with Actemra was diverticulitis. Because of that we had to stop the Actemra. I had diverticulitis a few years prior but decided to try Actemra since enough time had passed. Then we decided to give Methotrexate a try. That made me extremely tired. I had no energy. Just walking up steps was a chore and I would fall asleep just sitting on couch in afternoon while watching my grand kids. We stopped the methotrexate injections and my energy came back. Another relapse happened and that's when we decided to try rinvoq. If you decide to give rinvoq a try I hope it works for you. Keep me posted.

I also developed diverticulitis from Actemra and had to stop my infusions. At the time I was at 3 mg of prednisone, but when I stopped the Actemra I went to 4 and then to 5. I seem to be doing good keeping the GCA at bay for now. I have little flares if I work too hard and tire myself out. I am 80 and have had GCA and PMR for 5 years. I’ve decided that if I can stay at 5 mg of prednisone and not experience a major flare of either, then I’m not going to try any other meds. They all have side effects….and this seems to be a good time to stop trying all these drugs. I am still trying to clear up the diverticulitis problem created from the Actemra

Thank you so much for your replies. I figured I either had diverticulitis or IBS. My doctor told me if I have to go off the Actemra, she could no longer do anything for me. I can't take Prednisone because I developed Glaucoma from being on it for PMR then 6 months remission. I was hit with GCA after 6 months of remission from the PMR.. I started on prednisone then my doctor put me on Actemra and weaned me off prednisone. I have 10 more infusions to go before she takes me off of Actemra. I can't take Prednisone because I developed Glaucoma from being on it for PMR then 6 months remission. I feel I should ride it out the best I can. I haven't mentioned to her my problem. I am 85 and also developed stage 3 CKD. Wether this is from the Actemra I don't know. Ahhhh, the joys of growing old!!

@jmwm
Ask your Dr about trying Rinvoq. Right now that seems to be the only medication that has helped me get lower on the prednisone. Time will tell if it is a medication I can remain on but for now it seems to be working. Good Luck with whatever you decide to do. Prayers go out to everyone struggling with GCA that we can all find a solution that works.