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← Return to Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)
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Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)
Polymyalgia Rheumatica (PMR) | Last Active: 22 hours ago | Replies (383)Comment receiving replies
I was diagnosed with GCA from symptoms in April—awful headache constantly for nearly three weeks across my temples/ forehead, then jaw issues that panicked me. Felt as though my teeth were shifting position and jaw joint discomfort. Aware of seriousness, and of the false negative or positive potentials of a biopsy, we opted for a color ultrasound, which was inconclusive, but began prednisone immediately at 60mg. My pain disappeared literally overnight after one dose. I’m ending my 8th month now and really want off it because of the side effects, so, with my PCP’s advice, am tapering my dose. My goal is remission without relapse, which means very slowly. I’m down to 9 mg and the headache isn’t back yet. Finally saw a rheumatologist last week and we talked about going to tocilizumab to get off the steroid sooner, but I’m thinking it over in view of my age (80), the methods of administering the med, the cost, and the fact that I have diverticulosis and a higher risk of bowel perforation, which really scares me. Still thinking this over. I’d appreciate it if anyone with good or bad experiences on Actemra could share their opinions, as the drug’s warnings are truly dire. Like I could die during my first infusion, even if my insurance (Medicare Advantage Plan) would cover it! Thanks, all. S
Replies to "I was diagnosed with GCA from symptoms in April—awful headache constantly for nearly three weeks across..."
@brightwood what does your rheumatologist think about you going on to the actemra? I started on actemera last March or April at the age of 67 and I’ve had zero side effects. I was able to get off prednisone completely for about a month and a half to two months but since then I’ve had times when I’ve had to take prednisone along with the Actemra. I am now taking 2 mg of prednisone for two weeks and then I will go to 1 mg for two weeks and hopefully, as it will be around 11 months of being treated by the time I’m off prednisone completely, I can stay on actemra only without any mini flares. Good luck! 11 months ago I was very nervous about going on prednisone and also very nervous about going on. Actemra infusions. I am still not thrilled to have to keep going back to some dosages of prednisone, but I feel so much better than I did a year ago and your doctor will keep up with appointments not only asking you how you feel about getting constant blood work.
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@brightwood I started on 60 mg of Prednisone in July 2024 for GCA/PMR. While I was tapering, I got down to 9-10, I had a flare (Dec. 2024). I started on Actemra infusions in January 2025. I was able to taper to 0 in November 2025, with no issues. I felt so much better after a couple of months on Actemra. The only side effects so far, is that it lowered my WBC and I easily get respiratory illness (although I mask up in crowded situations). I don't have any pre-existing conditions as you do. I went the infusion route, as my Part D doesn't cover Actemra self-injecting dosing.