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I hope Actemra works for you. Being optimistic is important I think. I lost all hope that I would ever get off prednisone. I was being told prednisone was the "only option" for PMR/GCA.
I wasn't feeling optimistic at all when I tried Actemra. I reluctantly agreed to try Actemra just to get past the inevitable flare. My rheumatologist only said Actemra "might work" not that it would work. He waffled about doing an infusion or a weekly injection until he finally decided on an injection every 2 weeks to "play it safe."
What happened in the years that followed is amazing to me. There wasn't the instant relief like prednisone provided. There was just a slow but steady improvement in my overall health and well being. I was discouraged because of a couple of setbacks. At one point after getting to zero prednisone, I needed 60 mg again and Actemra was stopped while I tried a different biologic. It was because of something unrelated to PMR/GCA and it surprised everyone -- including me.
I truly don't want to give "false hope" to anyone but you do need some hope.
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Thank you for your words, which have given me hope. I am so glad to hear about your experience with Actemra. I believe that approaching the treatment with a positive outlook can help one have a (more) positive experience. I have to wait a couple of weeks until the rheumatologist sees the results of a battery of blood tests I have to have done before starting (if indeed the results will allow it). I started the whole journey in October 2018 with PMR and went into remission in December 2020. I was diagnosed with GCA in February 2022 and tapered to almost stopping point about a month ago. However, throughout treatment for GCA, my CRP count was very inconsistent and almost always too high. Therefore, it was decided that I should have a PET scan to see what was going on and they found that I have large-vessel vasculitis (GCA) in the aorta area and that it has quietly led to an aortic tear (b-dissection) - I have no symptoms and in fact since being on 40 mg Prednisolone these last 3 weeks, I have been feeling very well. I do hope that I can continue to feel like this when (if) on Actemra. My rheumatologist has said that she thinks I'd need to be on Actemra for 1-2 years. I am now also being checked by the Cardiological Department to keep an eye on the aortic tear. All the best to you.