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

Posted by lcb2021 @lcb2021, Mar 15, 2022

Hi, I was wondering whether others with PMR tend to feel significantly more tired than normal. I'm on 10 milligrams of prednisone which keeps me awake and focused for several hours, but by the afternoon I usually hit a wall and have trouble finishing work, which means I have to work extra hours over the weekend (remote/computer based work). Not sure if it's due to coming down from the steroids, the PMR, or both? Thanks!

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Linda M, LDN is showing promiss for Long Covid also. Talk to your Dr and read about it. There is some good stuff on YouTube also, but be selective.

REPLY
@davebaker

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!

Jump to this post

Hi Dave @davebaker, I wished I had found this taper plan my first time around with PMR. If you start to struggle again, you might want to give it a shot.

-- Dead slow and nearly stop reduction plan:
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

REPLY
@davebaker

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!

Jump to this post

I'm on my fourth attempt to taper below 8 mg. My rheumatolagist believes that 1/2 mg at a time is too small a drop but I insisted. I take the whole dose in the morning. I have made it to 7mg. I deal with fatigue, especially in the afternoon and I have more pain than I did before I got this disease. At times I wake up at 3-4 AM in pain since the prednisone has worn off. I haven't had a full-blown flare this time though. When I have that I spite fevers, feel like I have PMS ( I know you male sufferers can't relate) , have pain and stiffness all over plus severe pain in one area, usually my shoulders. After a month on 7 I will see how I feel. I'm willing to accept some pain which might be withdrawal symptoms from the prednisone as long as I don't have a severe flare.

REPLY

I felt extremely fatigued prior to being diagnosed ( took
18 months to be diagnosed being in pain 24 a day). Once i started the treatment of 30 mg prednisone a day there was bountiful energy, zero pain, no depression, When I started to
reduce the prednisone to 20 mg a day the fatigue, pain and depression all came eventually back. Now I think having PMR by itself ( like RA) creates fatigue, plus I think being on prednisone low dose can add to the fatigue. I must say however any issue with hypothyroidism can also cause fatigue. My T4 was not converting adequately to T3 ( T3 is the only thyroid hormone that penetrates the cell to create energy) Once I started taking a combination of T3 and T4 my energy started to improve. Also hypothyroidism can cause muscle pain so I am
wondering if my PMR is correct? What if it is from
the hypothyroidism?

REPLY
@lsm47

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?

Jump to this post

Prednisone takes over for the adrenals. The higher the dose and the longer you use the P, the less likely that the adrenals ( cortisol) will kick back in. I would guess ? that at an older age it might be harder yet…? I don’t know if doctors think about this or monitor it closely enough? It seems as if they prescribe the P and are done.

REPLY
@sharonanng

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.

Jump to this post

My coworkers like the fuller face on me as well. Its not too bad until it starts to hurt though or affects my vision. Thats the only downfall. I'm glad they are tapering my dosage. Best of luck to you too.

REPLY
@lmoross

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

Jump to this post

Hi @lmoross, I was also extremely fatigued before I knew I had PMR and GCA. I went to the doctor and got lab work done, and I was anemic. Anemia is one of the symptoms of PMR/GCA. It's called the anemia of chronic inflammation. It resolved when I started taking prednisone. Also, knowing people that have had COVID, fatigue stays with some of them a long time. I hope you feel better soon.

REPLY

I was fatigued when I was Dx with PMR. That changed when I was treated with prednisone.

REPLY

Been so exhausted this weekend even after a goods night sleep - on 40mg of prednisone and 10 mg week of methotrexate- fatigue seems to be getting worse and worse

REPLY

same here, since the onset of pmr I am not the same, lots of fatigue.

REPLY
Please sign in or register to post a reply.