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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.
Replies to "While being treated for GCA first time round, I didn't feel really bad - no pains,..."
I liked prednisone at first ... it was like I didn't have any need to sleep anymore. Until I had not slept well for days and days on end that I felt like all I wanted to do was sleep.
The circadian rhythm of cortisol which controls our sleep-wake cycle is severely impacted by taking prednisone.
https://www.medicalnewstoday.com/articles/does-prednisone-cause-insomnia#link
and
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8813037/
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Thank you for responding. I also have a lot of energy and cannot sleep at night. My biggest complaint is that my face is swollen, and I look disfigured. Also, my taste buds are gone, everything tastes blab, and I love to cook. My rheumatologist suggested infusion therapy; she didn't say Actemra, and I said let's wait. I will be interested in hearing about Actemra when you start it.