Are you still taking Enbrel for AS and uveitis?

Are you also taking prednisone for PMR? What dose of prednisone?

Actemra is working for me. After PMR was diagnosed, I was never able to taper off prednisone. I took prednisone for PMR daily for 13 years! Uveitis stopped happening for 13 years except for a couple of mild flares. Not having flares of uveitis was nice but moderately high doses of prednisone without being able to taper off wasn't so nice. Pain was constant but tolerable if I took enough prednisone.

My rheumatologist was certain about the PMR diagnosis in the beginning. As the years went by, she started calling my problem "systemic inflammation" or a "full range of things." She said I had a "history of" reactive arthritis and uveitis but I don't think those things ever went away. At first, my rheumatologist said I was unfortunate to have both PMR and reactive arthritis.

When Actemra worked so well, I tapered off prednisone in 7 months for the first time in 13 years. It would have been sooner except for having adrenal insufficiency caused by long term prednisone use. Adrenal insufficiency symptoms lasted about a year after I got off prednisone completely.

As soon as I tapered off prednisone the first time, I had a major flare of pan-uveitis but no pain. My ophthalmologist put me back on 60 mg of prednisone and wanted me on Humira. From my ophthalmologist's point of view, Humira was optimal to prevent uveitis.

Humira might be good for uveitis but it didn't seem to keep PMR pain from happening. It was my choice to go back on Actemra and Humira was stopped. It took 3 months to taper off prednisone the second time when Actemra was restarted.

My ophthalmologist said uveitis would likely recur if I was on Actemra. So far, that hasn't happened except for once. However, that uveitis was called a "traumatic uveitis" and not autoimmune related.

If the autoimmune type of uveitis happens again, I will gladly take prednisone for a month or two in order to put uveitis in remission. I just don't want to take prednisone again for years and years. I have been completely off prednisone for 3 years and counting.

I should say that I have been off prednisone for 3 years except for when Actemra wasn't available. Actemra was being used to treat severely ill covid patients. It was difficult to get Actemra for about 6 months due to the supply chain issues. I needed to go back on prednisone until supplies of Actemra improved. I needed prednisone again that time too. After Actemra was restarted for the 3rd time, I was able to taper off prednisone quickly once again.