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Acterma infusions for GCA

Autoimmune Diseases | Last Active: Aug 23 11:16am | Replies (20)

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Profile picture for eaod @eaod

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.

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Replies to "Sorry for the delayed response as I just saw this. I have been on Rinvoq for..."

@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.

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