To exercise or not to exercise, that's the question

Exercise does more good than harm in my opinion. However, don't think everything will return to normal as soon as prednisone is discontinued. It might take a long time to get back to normal depending on how long you have been on prednisone.

PMR is said to not cause any serious complications on its own. It might be the treatment with prednisone that might cause most of the harm. Although PMR itself may not be dangerous, long-term treatment with corticosteroids can lead to side effects such as osteoporosis, diabetes, weight gain, and increased infection risk just to name a few of the potential complications.

I still have PMR but I'm now being treated with a biologic instead of Prednisone. I have been off Prednisone for 5 years and my overall health and well being has improved since getting off Prednisone in spite of still having PMR.
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https://www.singlecare.com/blog/prednisone-and-exercise/
Aquacise has help me the most.

When and how did you switch to the biologic? Did you start with prednisone and biologic together then taper off the prednisone? I’m curious if it’s really necessary to go thru the whole extended, and sometimes endless prednisone tapering process before trying the biologic. Any PMR type flares on the biologic alone? Thanks.

At this point your body probably is not used to doing exercises so I would go very very very slowly and only do exercises that are comfortable for you to do and I would go really really slowly to build up your muscles Very very slowly!!! Your body will tell you what you can and what you can’t do. Best way to go is one step at a time! Good luck to you going forward!!!

I think little light exercise is very good to prevent stiffness and muscle loss. I also use the power plate at a low speed and the app Lazy Fitness with easy, even chair exercises. I feel a lot better when I do that

@brerabbit

My biggest regret was that Actemra (tocilizumab) wasn't tried sooner. When my rheumatologist told me that taking prednisone for the rest of my life wasn't a good outcome ... I was skeptical because Prednisone was a huge part of nearly half of my life already.

I took prednisone for 12 years to treat PMR alone. That doesn't count the 15 years of prednisone before PMR was diagnosed.

The first 15 years of Prednisone were for the treatment of other autoimmune conditions and not PMR. During those 15 years, my Prednisone use was characterized by high dose (60-100 mg) followed by a fast taper off Prednisone -- usually within a month. I didn't have many problems with side effects except for cataracts when I could taper off prednisone quickly.

PMR was diagnosed in addition to my other autoimmune conditions. My rheumatogist said I would need Prednisone "long term" which turned out to be more than 12 years. "Relapsing PMR" meant I couldn't get anywhere close to zero Prednisone before a relapse would occur. It became an "endless prednisone tapering process."

For my other autoimmune conditions that wasn't the case. Remission was achieved quickly and I tapered off quickly. Relapses happened but there would be a year or two between relapses when I didn't need any Prednisone.

I don't know how many PMR relapses happened before the biologic was tried. For all I know ... the relapses might not have been a PMR relapse. When Actemra was used to control my PMR symptoms, I quickly tapered down to 3 mg of Prednisone. That was when I was informed that I had a low cortisol level and would need to stay on 3 mg of Prednisone for an "extended period of time."
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I think a year or two of Prednisone might be okay for the treatment of PMR before trying a biologic. After that amount of time was when I started to have a serious decline in my overall health and well being. After a year or so was when numerous other medications were added to treat Prednisone side effects.

After about 2 years was when "steroid sparing" medications like methotrexate were introduced but methotrexate "failed." I couldn't understand why methotrexate, leflunomide and the like were only allowed one relapse failure before they were discontinued. Prednisone was allowed many, many relapses but could never be stopped until Actemra was tried.

After Actemra was started ... it took me slightly more than a year to taper off Prednisone. Most of that time was because my cortisol level was too low to discontinue Prednisone.

It sounds to me like you are being smart about this and doing the right things with regard to exercise. I like the fact you say 'regardless' of the weakness and stiffness you are exercising as it shows you know what is right for you at this point in time.

I see a kinesiologist twice a week and getting through those first initial reps with the stiffness is so hard but by the end of the session I have improved range of motion, feel stronger, the stiffness dissipates and I know I am building the muscles to better support the shoulder and hip joints going forward. Yet, it feels like starting from square one every session, that is the hard part.

Keep up the good work!!

I am a Silver Sneakers fitness instructor. I was diagnosed three weeks ago with PMR and started on 20mg prednisone. I was tapered to 10mg and pain returned, so upped to 15mg and it’s ok. I continue to teach and exercise three days a week. If you are able to join a Silver Sneakers class it seems perfect for anyone with disabilities. It’s a lower level class designed for seniors, or anyone not able or desiring to go to Zumba level classes. I plan to continue exercising and doing light weights as long as I’m physically able. I believe it can only help.

I believe anyone that hasn’t exercised in a while would benefit from a licensed healthcare provider guidance. Most likely a PT. The last thing you want is a strain or such that restricts your exercise ability. And there may be safety concerns, especially with balance. And there’s a likelihood of osteoporosis caused by the steroids, so you want to avoid falls.

Prednisone causes muscle wasting so while exercising, even modestly, try to bulk up your proptein consumption.

It is easy to want to quickly progress to your pre-disease exercise levels . Remember to take it slowly and try not to increase intensity and duration simultaneously

I attended a class yesterday on fall prevention and asked the PT instructor afterwards about PMR and exercise. Her recommendation was: whatever level of exercise you were doing before, cut it to 50-75% of that. Don’t try to get to 100% overnight. If you were a couch potato before PMR, then be extremely cautious. Overdoing it can lead to inflammation flare-ups.

I started with stretch bands 10-40 #
Start with 10. It may feel like nothing but you are building a restoration whether you know it or not.
Go slow, take as much time needed and a little soreness is to be expected. If it gets bad-stop for few days and start again.