PMR and exercise: What helps you?

I found this group while searching for flare up information, my pathway through PMR has been difficult diagnosed 3 years ago was accidentally left on 35mg of prednisone for 6 months, tried biological was great however diverticulitis was aggravated so had to stop, given Arava and developed peripheral neuropathy both feet (confirmed on EMG) Arava stopped. It has taken me over 12 months to titrate prednisone and finally January 15th 2022 took my last dose, felt wonderful so much energy just felt me! 23rd and 24th assisted pregnant daughter and husband to pack their house to move into their first home. Could not believe how much energy i had and how much i was able to do. 25th pain was so intense did not sleep 26th for more than 2 hours due to pain today 28th actually sleep ok mild pain overnight and on waking. Thinking it is a flare up due to physical exertion CRP measured yesterday is elevated. To add to this my Rheumatologist is 6 hrs away and only connection is to call her leave a voicemail and she will get back to me in about a week. My question is do most of you simple battle through a flare up or is it normal to increase meds. I am not looking for advice to increase meds just trying to understand what is the normal process, i will be waiting till i hear back from my specialist prior to doing anything, and maybe it will resolve on its own ? First "flare up" as first time in 3 years not taking medication? Thanks

Welcome @deniseinca, My PMR is currently in remission but I've had similar experiences as you describe when I really overdo the exercise or I'm outside 4 or 5 hours shoveling snow....but then I'm an old guy at 78 🙂 When I was tapering down on prednisone, my rheumatologist always told me to listen to my body and not overdo the physical exercises. I'm sure others can relate to your situation also and may have some experiences to share with you.

Also, my first time around with PMR was 3 and half years. I did have occassional times when I woud have aches and pains which I thought might be the PMR coming back but it was always after I over exerted myself and after a few days of not doing too much I felt a lot better.

Do you feel better as the day goes on?

Thank you John, i did have flare up i guess as i was titrating prednisone it would always occur day 4 after decrease and i would just battle through as i wanted to be off prednisone. Funny thing is evening, night time is much worse even when i felt great afternoons are when i would deteriorate and fatigue kicks in much different to original diagnosis which was all day everyday. i have been awake about 4 hours now and the pain is OK but the weakness is getting slowly worse. I recently retired as a Director of Health just too much throughout the COVID times so i am health literate but find this AI perplexing to say the least. I tend not to "google" too much as there is so much misinformation on most things. I am so happy to have found this group though! I am turning the big 60 this year! Thank you for your reply.

Just a thought...do get enough vitamin D? I think one of the side effects is fatigue and it also impacts the autoimmune system. Just read this recent study which was kind of interesting.

Vitamin D and marine omega 3 fatty acid supplementation and incident autoimmune disease: VITAL randomized controlled trial: https://www.bmj.com/content/376/bmj-2021-066452

I found this group while searching for flare up information, my pathway through PMR has been difficult diagnosed 3 years ago was accidentally left on 35mg of prednisone for 6 months, tried biological was great however diverticulitis was aggravated so had to stop, given Arava and developed peripheral neuropathy both feet (confirmed on EMG) Arava stopped. It has taken me over 12 months to titrate prednisone and finally January 15th 2022 took my last dose, felt wonderful so much energy just felt me! 23rd and 24th assisted pregnant daughter and husband to pack their house to move into their first home. Could not believe how much energy i had and how much i was able to do. 25th pain was so intense did not sleep 26th for more than 2 hours due to pain today 28th actually sleep ok mild pain overnight and on waking. Thinking it is a flare up due to physical exertion CRP measured yesterday is elevated. To add to this my Rheumatologist is 6 hrs away and only connection is to call her leave a voicemail and she will get back to me in about a week. My question is do most of you simple battle through a flare up or is it normal to increase meds. I am not looking for advice to increase meds just trying to understand what is the normal process, i will be waiting till i hear back from my specialist prior to doing anything, and maybe it will resolve on its own ? First "flare up" as first time in 3 years not taking medication? Thanks

John, Yes I did have the moderna shot months ago and really had no reaction to it. I can't remember now if I was having pain at that time. I was taking leflunomide along with the Pred for months and my pain level was good. I had severe reactions to the drug though, so they put me on oral Methtroxate instead. That was about 4-5 months ago. I can't tell if it is working because as I taper from 5mg to 4mg my pain is getting worse each day. I am supposed to taper to 3 in a week and I don't see that happening. That is why I am questioning infusions. My doctors have told me in the past that they believe I may end up on them, I'm a very healthy, positive person and I ignored that, thinking I would heal quickly with a good attitude and taking the drugs as directed. Well, I guess I am finding the reality of what this condition really is and that it is not easy to get into remission. So, now I will have a serious discussion with my rheumatologist about the infusions. I haven gotten a response from anyone who has tried them on any of these support groups. It sure is nice though to connect with others who are suffering with the same condition rather than just doctors who have not. Thanks for being there!

I’m about a year and a half in and tapered down to 4 MG successfully (through much flaring trial and error). My current pain mostly presents in my shoulders.

I see lots of folks reference “overdoing it” and I’m kind of intrigued about how that feels to people. Is it always the next day that night a few days later and is it PMR pain?

I asked because this week on vacation in the Palm Springs area …. I went for an 8 mile hike, felt great the next day so I went for a more strenuous 3 mile hike and felt great for 2 days but today I’ve pretty much napped all day! It’s strange, I’m thoroughly exhausted but don’t really have a ton of pain! The only other variable to toss into this is I watched my son’s 2 hr baseball game yesterday in damp cold Seattle. Is that overdoing it?

@jmcc - That would be seriously overdoing it for me 🙃 but then I'm older than dirt and can't walk very far or very long without lower back pain. My own personal definition of overdoing it is when my body starts to hurt I think it's telling me stop doing that. I think it's a different definition for each of us since we are in different physical conditions and have different definitions of what is pain for us. I'm thinking a chance to watch your son's 2 hr baseball game was a treat for you and was worth it either way!