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.
My experience with GCA is similar in that I too have large vessel vasculitis GCA , no cranial or temporal involvement after one year of pmr.
There were very few symptoms, just occasional night sweats, no pain , no head and neck or visual symptoms . Subsequent Blood tests showed high CRP and high ESR , low Haemoglobin.
Pet scan confirmed extensive GCA of large vessels. You don’t feel inflammation in your aorta!
I had a small pericardial effusion ( fluid around my heart) after extensive cardiology checks seems I have no cardiovascular damage including no aortic damage.
Started 50mg pred and 162mg Actemera sub cutaneous weekly , simultaneously . A four month taper off pred schedule. Now Down to 10mg pred and Dr is confident I’ll be off pred and continue actemera for 12 months as a mono therapy. He says any relapse will be treated with Actemera alone and no more pred .
Anyway just be aware GCA is not always temporal and symptoms can be few .
I’d actually been travelling from Australia around Europe, had been walking, doing long haul flights etc … and was feeling great at time of diagnosis. Only the night sweats alerted me to something was not quite right, and sent me to the Dr when I got home .
Dr told me he had 10 new GCA patients in the last yr , and all of them presented very differently.