Working out with PMR

@jeff97

I had about 20 years of experience with high doses of Prednisone before PMR was diagnosed. I was a lot younger and very fit. I could take upwards to 100 mg of Prednisone and taper off again in 30-45 days. It was my standard treatment for flares of uveitis. My ophthalmologist called it a "prednisone burst." I called it an "energy burst."

My ophthalmologist was amazed how easily I could taper off Prednisone again after remission of uveitis was achieved. My uveitis flares were treated as a medical emergency just like GCA should be viewed as a medical emergency. I averaged 1-2 uveitis flares every year so I got a lot of practice taking prednisone on a short term basis.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
-----------------------------
I try to differentiate "short term" use of Prednisone from "long term" use of Prednisone. After PMR was diagnosed my rheumatologist had to reeducate me. She had to convince me I would need to take Prednisone on a "long term" basis. Whatever short term Prednisone use skills I had no longer applied. I don't know if age was the difference but I experienced a steady deterioration in my overall health and well being on "long term" prednisone. It took me close to 13 years until I finally got off prednisone again after PMR was diagnosed. My rheumatologist said Actemra represented my "best chance of ever getting off prednisone."

My "short term" experience with Prednisone was completely different from my "long term" experience. I'm still doing monthly Actemra infusions but I have been prednisone free for 5 years.

There is no question that my health and well being has improved since I tapered off Prednisone except for something that was recently diagnosed. The problem was present when I was still taking prednisone. This new problem might have contributed to my elevated IL-6 levels. I'm asymptomatic so I didn't know until recently about the problem described in the following link.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11480914/

Please do not increase prednisone on your own. You are paying your doctor to make those decisions. When we stop trusting our doctor it's time to change to another.

Have a search for information using the terms exercise, PMR and cytokines. You really do not want to over exert with PMR and produce cytokines which aggravate the inflammation and the condition generally. You can still exercise but at a level to produce myokines which will proactively help you keep fit while dealing with the PMR. Try looking at http://www.pmrgcauk.org.uk and read the Exercise and Nutrition Resource. The ‘no pain no gain’ philosophy really does NOT work with PMR.

I am 72 and spent seven months tapering down from 25 down to zero over the course of seven months. I still have some remaining pain in my shoulders but am happy to be off of prednisone and will not take that drug again.

@bettebaldwin

I don't have access to the link you provided. Is the following link what you are referring to?
https://pmrgca.org.uk/information-and-advice/exercise-and-nutrition/
--------------------
I think the information is generally good. To be honest ... it has been a long time since I was a part of the PMRGCAuk online forum. I don't remember everything that was said about DOMS. Some of what was said about DOMS just didn't jive with where I was at in my PMR journey.

I was seeking a way for my endurance to improve. I wasn't having too much pain since I was on Actemra. I wanted to taper off prednisone. At the time, taking Actemra to treat PMR was controversial on the PMRGCAuk forum for some reason. I was a member for a few years before some things happened.

My biggest problem at the time was "overwhelming fatigue." In retrospect, I think my overwhelming fatigue along with some aches and pains were characteristic of adrenal insufficiency. My endocrinologist told me to resist the urge to increase my Prednisone dose if I wanted my adrenals to recover. I had to stay on 3 mg for a long time and it was "uncomfortable." I desperately wanted to taper off prednisone rather than being told to increase my prednisone dose and to take prednisone for the rest of my life if I had to.

I was being supervised by a physical therapist during this time. The physical therapist didn't push me to the limit. The exercises were being increased during each physical therapy session. I was getting mixed messages because the physical therapist was encouraging me to do more exercise while the experts on the other forum were encouraging less exercise. I had DOMS after the physical therapy sessions but I didn't have a PMR flare. I think DOMS and PMR are separate entities. I was ecstatic that my recovery time after exercise started to improve as I continued with physical therapy. I was increasing the amount of exercise I did. I could recover faster which my endocrinologist said was a "sure sign" my adrenals were recovering. I needed to be encouraged to keep doing what I was doing.

Actemra and being on a lower dose of prednisone allowed me to recover from adrenal insufficiency. When PMR was first diagnosed I wasn't sedentary. Being sedentary happened over time and only got worse the longer I took prednisone to treat PMR. There are many references to what is called a "steroid burden" which really seemed true to me. The longer I took prednisone it seemed like I was carrying a heavy load. Doing anything at all took a lot of effort.

@kjoed53 When I was first diagnosed with PMR, my rheumatologist provided guidance, but he also trusted me to decide if my body needed a temporary boost or even to slow down a taper. I of course kept him apprised of what I had done. By the way, I was following his directive, not my decision, when I developed the prednisone withdrawal that led to my SAI. He actually apologized to me for having not picked up on earlier signs when I saw him for my annual visit. I seriously considered changing doctors, not just because of that but also because my PCP retired, and I will be receiving care in a different medical system — it seemed easier to consolidate care in one. But both insititutions here are teaching hospitals and medical centers, and I was offered only a fellow, not a specialist whose “about me” statement mentioned experience with complex disorders. No one is perfect, and I did appreciate his admission, so I am staying with him, But I am also advocating for myself because I have seen too many instances in my own care and that of my husband and mother where “doctor knows best” resulted in longlasting sequalae and in the case of my husband, hastened death.

@potterywoman You make a very good point. Before PMR I always thought medicine was a 'science' Now I realize it is an art and completely subjective and with PMR seemingly different for everyone. Seems indeed one's only choice is to strongly advocate for oneself. My doc told me (as per relatively new Dutch PMR protocols) to trust the finally normal sediment test and reduce the 2.5MG from 7 days a week, to 6 to 5 and so on. I was frightened to so so, almost like the pred was a crutch. My last dose (only one day that week) was September 9. So we become experts, yet have to have trust in docs;-)

@potterywoman
Everyone needs to make the decision of whether to trust their doctor or not. To me it makes absolutely no sense to do something without your doctor's knowledge. It makes even less sense to me to stick with a doctor that you don't trust to make decisions or help you to do so.

@pmrnew Good luck with your reduction. My rheumatologist told me that I might have to be on a super low maintenance dose of 1 mg every other day for the rest of my life. I'm ok with that -- a good friend and retired pathologist takes prednisone for a different condition. When she has a flare, she has to take a really high dose and then taper. She generally does well on her maintenance dose of 1 mg every other day. Since she is approaching 90, it apparently does no harm.

@martyn No advice. My goal was to move as quickly as my body would allow. I went from 10mg to zero in about 5 weeks after 6 months of prednisone. I have been off now about 5 years. Still work out daily. combination of weights and aerobic. I had a hip and knee replaced. So life keeps throwing things at me. Good luck.