Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

everyone is so wonderful and supportive of these horrible diseases. i plan to write my story and hope everyone does too. i kinda get it all now, not great but better to understand more. it's taken a long time. i hope we help each other

It might be an adrenal problem rather than a problem with Actemra. I successfully tapered off Prednisone after Actemra was started. I had adrenal insufficiency that caused some of my problems with tapering off prednisone. Warning -- it is a long story so stop here if you aren't interested.

My experience was similar to your experience. I tapered my prednisone dose by 1 mg per month from 10 mg to 7 mg. I had no idea if Actemra was working or not. All I knew was I didn't have a flare at 7 mg of prednisone which was unusual because that is where my symptoms would always return. I wasn't symptom free but I didn't have a flare such that I had to go back to 10 mg.

I was discouraged so my thought was I would get the "inevitable flare" over with. I tapered by 1 mg per week for the next 4 weeks. My pain symptoms didn't get worse but I felt miserable because of overwhelming fatigue. I can't exactly describe how I felt because I was in uncharted waters on 3 mg of prednisone. I wasn't sure what to do except for being told by an endocrinologist that I should come back to see her if I ever reached 3 mg of prednisone.

I described my symptoms to my rheumatologist and he checked my a.m. cortisol level. My cortisol level was low so I was told in no uncertain terms that I shouldn't taper any lower than 3 mg. My rheumatologist referred me to an endocrinologist except the next opening was several months away.

In total, I was on 3 mg of prednisone for about 6 months until I was seen by an endocrinologist. We discussed my long term (12 years) of prednisone use for PMR. My endocrinologist was encouraged that I still had a cortisol level after 12 years on prednisone. We had a long discussion about stopping prednisone. My endocrinolgist said she didn't know what would happen if prednisone was stopped. She thought prednisone could be safely stopped because my cortisol level was "adequate." If I stopped prednisone , she stipulated that I could go back on prednisone again for any reason "if I felt the need." She also said 3 mg was such a low dose that tapering wasn't needed but I could if I wished.

I elected to try to get off Prednisone so I did a fast taper to zero. Things didn't go well the first time I tried to taper off prednisone. I will spare you all the details but I soon had a need for 60 mg of prednisone again. The problem wasn't PMR or GCA but something else entirely. I was devastated and I didn't think I would ever get off prednisone.

What followed was a year of "adjustments" to my treatment plan. Actemra was stopped for a few months while and a different biologic called Humira was tried. Humira didn't work well when PMR pain returned and I was stuck on 15 mg of prednisone again.

My rheumatologist gave me the choice of trying Acterma again or staying on Humira or prednisone. There was no way I wanted to stay on prednisone for the rest of my life. I tried Actemra a second time and tapered off prednisone again. The second time, I went from 15 mg to zero in 3 months.

I currently do monthly Actemra infusions instead of the injections. I have been off prednisone for the past 3 years with no symptoms of PMR/GCA. My quality of life has improved since getting off prednisone. My life isn't completely pain free but all my prednisone side effects are improving or have resolved.