When did your prednisone side effects end?

You started on a high dose for someone with PMR! I started at 60 to treat GCA and PMR. I've been taking Actemra for a year and a half, and I finished prednisone 6 months ago. My worst side effect from the prednisone was insomnia, and that diminished a lot at 40 mg. I had a problem with muscle strains when I was exercising as I tapered from 20 down to 10, and then that problem went away. I started losing the weight I had gained and my moon face as I got below 7. I only had a ravenous appetite in the first few weeks I started treatment, at 60 mg. The rest of the time I had a sluggish metabolism, and it was hard to know what and how much to eat. My metabolism only recovered about a month after I stopped prednisone. I had elevated cholesterol until I got down to about 15, and then that cleared up.

I think it depends on how long you stay on Prednisone, I had two distinct experiences with taking Prednisone. I routinely took 60 mg of Prednisone and up to 100 mg sometimes and tapered off again in a month or two. I know for a fact that bursts of high dose Prednisone followed by a fast taper works well for some autoimmune conditions and flares. I did many of those Prednisone bursts and fast taper off again for 20 years before PMR was diagnosed. I never had that many lingering side effects from "short term" but frequent Prednisone use other than early onset cataract formation at the age of 40.

I attempted to do the same Prednisone burst and fast taper after PMR was diagnosed. It didn't work for PMR like it did for my other autoimmune conditions. My rheumatologist and I had a long talk about how we were going to treat PMR. She said PMR was going to be a "long term proposition" and I needed to find a "stable dose" of Prednisone that worked. I needed less Prednisone to start with (roughly 30 mg) but it took me more than 12 years to taper off.

This second experience with Prednisone was when I experienced all my side effects. The side effects I had were slow and insidious but over time it was hard to deny that taking Prednisone on a "long term" basis was completely different from taking Prednisone on a "short term" basis.

My side effects from long term prednisone use didn't improve as soon as I tapered off Prednisone. My side effects from long term prednisone persisted for a long time. Adrenal insufficiency alone didn't allow me to completely taper off Prednisone for almost a year. After I tapered off Prednisone it took at least another year for my side effects to start improve. For example --- my 3 blood pressure medications were stopped one by one during the 2-3 years after Prednisone was stopped. I have been able to discontinue many of my medications that were treating Prednisone side effects. Some of the medications I was taking were started to prevent prednisone side effects.

I have been off Prednisone for more than 5 years. I still say that I am "recovering" for PMR and Prednisone side effects.

@jeff97
Thank you! I have a typo in my original post. I started at 25mg, not 40. I appreciate your response!

@dadcue
Thank you so much. There’s so much to think about where PMR is concerned. So many differences among our recoveries. Every day I set out to have the best day possible. Hearing from others is a great help.

I've been off Prednisone for 9 months after a 2 year taper. I still have periodic neck pain/stiffness and fatigue. Bags under my eyes are still there and likely to stay there. My skin is so thin that I can rub or bump up against something without realizing it until I see the blood on my arm. But hey, I can live with this, considering the alternative(s).