While being treated for GCA first time round, I didn't feel really bad - no pains, for example - but I always felt more or less tired. It is possible I should have been on higher does of the drug for longer intervals as my CRP count, which fluctuated a lot, was always too high. I should have been out of the drug about a month ago but again my CRP had gone up. Therefore, it was decided that I should have a PET scan to try ascertain what was going on. It showed all the things I mentioned in my first post. I have now been on 40 mg Prednisolone for three weeks and in that time, I feel better than I have for a very long time - I'm full of energy and have a hard time believing I am ill. The only side-effect I have is that I cannot sleep for long but I just get up and get things done. It doesn't seem to affect my next day. I am so hoping that when I start on Actemra, this state will continue. All the best to you.

My relapse wasn't really a relapse. I had been treated for GCA (first time) from February 2022 until about 4 weeks ago when I had expected to stop taking Prednisolone, having tapered down to the appropriate amount for stopping. However, my CRP, which had fluctuated throughout treatment but had always been too high in spite of the medication, was of concern and that is why I had abruptly to get off the drug and be off it for two weeks so they could do a PET scan. This showed that GCA was still rampant and mainly in the aortic area and that I had two aortic tears (as I mentioned previously). During the whole period of my treatment, I was feeling tired but did not have other symptoms. Since beginning this new round 3 weeks ago (@40 mg), I am feeling really good.