I started at 60mg (due to GCA confirmed through temporal biopsies) and it took me 1 1/2 years to taper off prednisone and another six months after that to get off Actemra.
I could not sleep - had to work with my doctor to put together a sleep cocktail that worked - CBD/THC 1:1, 5 milligram Valium, 50 mg Trazadone. That usually worked.

My biggest negative effect was I lost 7% bone density (even though I took one shot of Reclast as I started Pred/Actemra.

Also, tremendous fatigue. And yes, I had those red blotches appearing on arms and legs and sometimes scraped skin unknowingly and it would bleed. But I just got used to that happening.

I had some ocular migraines (a rather psychedelics image appearing in the eyes that one lasted a few Minutes (see example photos) Ophthalmologist confirmed not GCA related and not a serious issue.

I was also super sick w horrible GI issues and couldn't eat. Had to try to force myself to eat. Lost 30lbs. Finally after two years that subsided - but lots of supplements working my integrative doctors.

Body was completely deconditioned and has taken me years (working w PT) to start to build back up in strength and stamina.

Was off Pred for three years - and now had a relapse, back on Pred, started at 10mg two months ago and now am alternating 5/6mg. Tapering very slowly. Super hungry but trying to control myself!!!

My next Dexa scan is Sept 5. Not looking forward to it ☹️

I am requesting a transfer to a new rheumatologist since I don't feel my current one "gets me". He wants me on a very aggressive taper and given my history I know that is not
right. Then he says "you need to get off prednisone as quickly as possible". Duh .... really?

Anyways - I am fortunate that I don't have pain now and am starting to build up my exercise program and walking.

Oh yeah, I also broke a bone in my hand - had to have surgery, and tore my meniscus when I attempted to try a gym class!!! Had arthroscopic surgery last October but knee still has problems So now looking at knee replacement. All that could just be aging (I am 70).

Anyways - gratefully, I am a naturally positive person. My meditation and Buddhist teachings have helped immeasurably.

Good luck to everyone!!! 🩷