PMR and fatigue

Interesting - I am easily fatigued. I don't usually require a nap, but I do find I need to sit and rest after relatively little activity. I have not specifically talked to my Dr about it because I had a number of health issues at once. (Stroke, PMR, Cancer/6 months chemo, PAD and a wonky knee)... all of which wear you down. My PMR wasn't diagnosed for almost 18 months as a result. However, I fully recovered from the stroke, finished chemo 4 years ago and have been off prednisone for a year (after 2.5 years on).... but still lack energy. I am interested in hearing from others how long it took to regain energy.

I was diagnosed with PMR/GCA in July 2024 and began 60 mg. of pred. With that dosage of pred, I was sleep deprived. I would go to be early, wake up hourly to go to the bathroom, then couldn't fall back asleep until it was time to make another trip to the bathroom. I would get out of bed at 4:30 a.m. By 11 a.m. I was ready for a nap. I'd sleep for a couple of hours. This all improved, as my dosage was tapered down. That being said...

Now, I'm at 4 mg. I definitely have more energy than last summer. I tell people I'm 100% better than last summer, but I'm only about 50% of my pre-PMR baseline. I get an Actemra infusion every four weeks. I'm a morning person, so I try to do my activities (golf, pickleball, bike) then. Afternoon, I'm ready to relax in my recliner and close my eyes for a while. I noticed that I was gaining more energy this summer and I was happy that I could resume some activities that I hadn't done for over a year. Then, I got Covid in mid-July and the symptoms lasted 3 weeks. Since then, I feel I have had a set-back in my energy level. I'm hoping that it will pass, as time goes on.

@mjontour, thank goodness you are pain free. But the fatigue as you describe it can be debilitating and really affect quality of life. You may be interested in these 2 related discussed in the PMR group:
- PMR and Fatigue. Interesting study: https://connect.mayoclinic.org/discussion/pmr-and-fatigue-interesting-study/
- Is fatigue a symptom of PMR?: https://connect.mayoclinic.org/discussion/pmr-14/

You mentioned about having to take advantage of the 2-3 hour window when you're able to get things done and having to pace yourself. I bet that is a big adjustment.

There is an interesting discussion in the Autoimmune Diseases group that might interest PMR members about conserving energy:
- How do you plan your day and conserve energy? Are you a Spoonie? https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

@mjontour, what tips or coping strategies have you picked up as you figure out how to manage the fatigue?

Hello @mjontour. I'm now at 2.5 years with PMR.
@73 now, down to 1mg (starting today) for next two months. Just last week fatigue and brain fog kicked in for about three days. It seems to happen after I do a little too much yard work. But not always. Lately when I think I've figured things out trying to separate PMR from Prednisone withdrawal, my symptoms get confusing. I only get about 5 to 6 hours of interrupted sleep because of the bathroom trips. Usually get another hour and a half of uninterrupted sleep mid morning. I'm currently not experiencing specific PMR pain for at least the last 7 months. Only sporadic, mild to moderate joint pain and lower back pain from hx of l-4 l-5 B. disc. My energy levels have been slowly increasing since the time I noticed the absence of the classic shoulder and hip pain. My doctor did mention the possibility of staying on a low dose of prednisone if I couldn't wean completely without complications. We're both glad I've made it this far with only one flare up in the first year (Sept. 2023). Unfortunately I also have to deal with a flare up of my diverticulitis about 2 weeks into the drop of Prednisone dose. When I got down to 6mg. (been tapering by .5mg since I got down to 5mg) I did notice my body having more side effects by tapering each month. Went to two months with better results. Don't think I'm out of the woods yet. Pressing forward. Might permanently need that 1mg bandaid for my lower back?
Best wishes to you on your journey.
Ernie

I too have brain fog and fatigue since diagnosed 2 yrs ago. I finally got off pred a month ago and am now in withdrawal. The symptoms are extreme fatigue, muscle and joint pain not unlike PMR. I’m also on a once a month Actemra infusion. The hope is that it will ultimately take the place of Prednisone.

Thank you for your message. I am most interested to read that your fatigue got worse when off the prednisone. I hope it goes away!

Thank you for your message! It’s so interesting to read about tapering and fatigue! It’s such a journey for something that just appears out of the blue! I am trying to build up endurance but pay the price! Every day is a science experiment as I try to live life as normal as I can. Thanks again for sharing.

Thank you for that! So interesting. I have shared the spoony article with my family. I have realised the importance of staying connected but understand the toll it takes to use my brain when interacting with others. Some friends take more spoons than others! I plan my life at least a week in advance and plan my activities in the morning and at lunch if I can.

Thank you for this! I feel as you do that every positive is a win as I work through how much I can do without crashing! Social activities are by far the biggest energy zappers! Physical activity has always been a big part of my life so working out how to incorporate both social and/or physical activity into my life at the moment is a challenge. Big change! I thank everyone for their insites!

My situation is not too dissimilar from yours, but I slowed my decreases down to .25 mg lower each time once I got to 5 mg. (I quartering a 1 mg tablet.) I have noticed an increase in lower back pain especially whenever I decrease a dose that goes away after a few days. After a period of being at .25 I am adding back into my vitamins Turmeric-Curcumin, having understood they interfere with prednisone’s effectiveness. My tact is to run prednisone out of commission so it is simply not a factor anymore. But…
I am impatient and probably should slow this process down. But I guess I don’t mind the gamble. I hope if I do flare it is a step up in pain rather than a whole body response so that I would backtrack to no Turmeric-Curcumin or even back up to .5 mg and then descend more slowly. I just want to get off all drugs ASAP!