Feeling tired! Do others with PMR feel significantly more tired?

Hi- I have had PMR since August 2020. Started on 20mg and recently went down to 4 mg. The fatigue has always been there but it got extremely worse and I felt very anxious. The doctor ordered an ACTH test and found that my adrenal glands weren’t working. Now I am on 7 mg again and feel somewhat better. Hopefully my adrenals will come back and I will be able to come off the prednisone. I would be interested to know if anyone else had this problem. and what was the outcome?

Welcome @lsm47, I haven't had the ACTH test when my PMR was active but did have some minor fatigue. I'm hoping others with similar experiences will be able to share them with you.
I did find some related information that I think may explain what may be going on. It's also why I think tapering off of prednisone needs to be done slowly.

"Prednisone is similar to cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their normal function." --- STEROIDS & Adrenal Suppression (PDF file) - https://aiunited.org/wp-content/uploads/STEROIDS-ASTHMA.pdf

Did your doctor explain the details of what wasn't working correctly with the adrenal glands?

The doctor really didn’t explain much to me. She did say that one has to get off prednisone very slowly and that sometimes has to be on prednisone forever. I have an appointment with another endocrinologist and my rheumatologist in mid-October.

Thank you John for the info.

I've been on 60 mg of prednisone since september when they diagnosed me with cryoglobulinemia. At the end of October I started getting (what my ENT told me) was moon face. It seems like my face keeps getting more full. My coworkers like the fullness in my face. Im starting to taper the amounts of prednisone every two weeks now. Im at 50 until next week. At least my joints don't hurt. I just wish my face didnt hurt at times. Plus it does affect my vision when my cheeks get too puffy. i look at it as Im just glad Im here and not the only one with this.

I had the ACTH test when I was trying to get diagnosed (during the 4 yrs with the rheumy who didn't seem to know what to do with me.) The year before I had had a bad Crohn's flare and had been on pred and entacort, a local steroid you take for your small intestine. But that was past, I had tapered off and that was when the undiagnosed PMR hit. So I had my adrenal gland tested about 7 months out from all the steroid taking. My base line and 30 minute draw were under the low cutoff but the 1 hour test was in normal range and twice the baseline so they said I was ok. (At least I wouldn't go into shock if my adrenal was challenged.) All this tells me that the adrenal gland takes awhile to recover from being reliant on steroids. How long it takes is I suspect somewhat individual

I had the same issues and my friends thought I looked better with a fuller face. As I have tapered the prednisone, the moon face has disappeared and my wrinkles came back! I do feel more like myself now. Hang in there and best of luck to you.

Very fatigued since PMR diagnosis. Also wonder if it may be exacerbated by my long Covid.

Hmmm… 🤔Forever? Not a good prediction or theory. Prednisone is NOT something to accept as a lifelong solution for anything.

I have been on 4 different slow tapers since Oct 2021, each one failing at around 10mg-9mg. The afternoon/evening fatigue was awful. This regimen my rheumy has me on a split dose, higher dose in morning (right now at 9mg) and 5 mg in the evening, that has seemed to help with the fatigue and I can still sleep at night. Still nervous when I get to 5mg/5mg split but taking things one day at a time. Good luck!