Working out with PMR

I was 69 when PMR started. I too worked out. I have lifted weights since high school. I have managed to build considerable strength but at 69 was finding my max workouts were gradually getting a little less. PMR is not considered a muscle wasting disease although inactivity can be. I started on a every day workout when PMR hit. There were days that I could not even lift the bar. This became much easier with prednisone. During the taper I just kept going. Some days were not easy. I switched to more of workout routine that incorporated every muscle group each day. This was more of 3 sets of warmup. I added weight as my strength increased. I believe this helped me get off steroids in 6 months. I think the exercise is critical to helping eliminate the inflammation. I cant say what your pushing to hard is. I know there will be days when it might be dangerous due to risk of muscle damage. Just take your own pace. Prednisone has a half life of 3 hours. It stays in your system about 10. Your body is going to feel the fatigue of tapering. Particularly later in the day. I used Dexamethasone which has a much longer half life. My advice is keep working out. Take your better days when you get them. Watch your diet on prednisone and rest when you need to. Coming out the other end will put you in a better much place. I am 73 now. I kept my every day workouts. Some strength returned but its not my 69 strength. I am happy these days to try and maintain what I have.

I am a Physical therapist...9 mo history...managing this without prednisone...must take a daily dose of Diclofenac. I take a ton of supplements addressing inflammation, detox, and rebuilding the microbiome. Prior to PMR, I worked out every day in some way...walking 9 or 18 holes of golf, weight lifting, walking several miles, elliptical, bike, or swimming. For a period of time, I had to stop everything. Weaker I became. Slowly I am getting myself back. It is hard to get back the strength I had prior to all of this. I have found the greatest success with lots aerobic on the bike or elliptical for anywhere from 20- 4o minutes. My body likes HEAT....sauna, salt water baths, and steam room. Modified weight lifting is manageable after that on most days. Cannot do the weights I did beforehand. Shoulders are the worse. Squats I do, but it is often difficult to discern if I've made myself the normal muscle sore, or PMR sore. Every day is different. My advice...do not quit exercise. It is the most important part of the healing process, or you will simply get weaker. There is no question this disorder makes you weak....grip, gluts, shoulders, etc...You have to combat that with strength training as much as your body allows. I too have found if I do too much, I will be more painful. As I've gotten better, I can do more and more. Hang in there.

Hi @glinda47 I’m early on this path having been diagnosed 5 weeks ago and currently on 10mg with no PMR pain.. im in that strange kind of limbo where I actually feel great at the moment physically and able to do my usual loads on the bike. Did 100km yesterday no problem. My concern is how will things pan out on the taper down ? Like you I intend to push through as much as possible and keep doing my usual routines with some moderations of the body doesn’t feel good. Have to admit I’m on another forum in the UK and I get a bit tired of the narrative that exercise must be taken very gently and you have to kind of do only minimal amounts and not push the body. I’m 58 and feel strong and always been resilient coming back from injuries. So I’m with your ‘can do’ attitude !! Hope it goes well

@martyn I finally left the UK group completely because of their caution about exercise. I kept seeing references to delayed onset muscle soreness as something extremely dangerous. I've had extreme soreness before, and I always recovered. Soreness is part of getting better. I've kept exercising through 3 years of PMR and GCA, and it has been very beneficial for my physical and mental health. It hasn't caused any long term problems. People just need to use caution and good judgment.

Regarding tapering, the biggest question is how your adrenals will respond. I didn't have any noticeable adrenal issues as I tapered. I think I had some some cortisol suppression that limited how hard I could push myself, but I didn't have any symptoms of adrenal insufficiency. If you run into those problems, I think it would affect how much you can exercise.

@ds1 great work…. I too had bike accident and similar path issues f diagnosis and recovery.
And am now drug free, pain free and awaiting next blood work in 2 months.
Keep up the good work..
lemons turned to lemonade.

@martyn I finally left the UK group completely because of their caution about exercise. I kept seeing references to delayed onset muscle soreness as something extremely dangerous. I've had extreme soreness before, and I always recovered. Soreness is part of getting better. I've kept exercising through 3 years of PMR and GCA, and it has been very beneficial for my physical and mental health. It hasn't caused any long term problems. People just need to use caution and good judgment.

Regarding tapering, the biggest question is how your adrenals will respond. I didn't have any noticeable adrenal issues as I tapered. I think I had some some cortisol suppression that limited how hard I could push myself, but I didn't have any symptoms of adrenal insufficiency. If you run into those problems, I think it would affect how much you can exercise.

@tweetypie13 Drug free?
No more Kevzara?

@martyn I finally left the UK group completely because of their caution about exercise. I kept seeing references to delayed onset muscle soreness as something extremely dangerous. I've had extreme soreness before, and I always recovered. Soreness is part of getting better. I've kept exercising through 3 years of PMR and GCA, and it has been very beneficial for my physical and mental health. It hasn't caused any long term problems. People just need to use caution and good judgment.

Regarding tapering, the biggest question is how your adrenals will respond. I didn't have any noticeable adrenal issues as I tapered. I think I had some some cortisol suppression that limited how hard I could push myself, but I didn't have any symptoms of adrenal insufficiency. If you run into those problems, I think it would affect how much you can exercise.

@jeff97

I gave up on the UK group too. I really think it is better when people share personal experiences only. Most of the people on the UK forum were good and asked questions and shared personal experiences. There were a few people with titles after their name on the UK forum that needed to be reined in. They pretended to know everything and give medical advice. Their usual medical advice was to take more prednisone for any pain when I was interested in decreasing my prednisone dose. Had I listened to the experts on the UK forum, I would still be on prednisone.

The DOMS that was talked about on the UK forum seemed ludicrous to me. It doesn't take very long for muscles to complain when they aren't being exercised. Muscles quickly get deconditioned leading to noticeable stiffness, weakness, and fatigue when you try to use them again. My belief was that I needed to work through that type of pain and stiffness as long as it didn't hurt "too much."

I'm still in a recovery phase so my muscles get sore after exercise. When I first tapered off prednisone, I didn't have any exercise tolerance. I'm now convinced that my exercise intolerance was more likely caused by adrenal insufficiency rather than PMR. What motivates me currently is how quickly I recover after exercise but I still have room to improve. I doubt that I will be running any marathons anytime soon. I try to be realistic about doing a marathon but that doesn't prevent me from thinking I could do a marathon if I trained for one.

My "exercise tolerance" and "recovery time after exercise" have improved tremendously but my muscles still get sore afterwards. Technically, I still have PMR but I'm not being treated with prednisone anymore. I'm being treated with Actemra instead of prednisone. The overwhelming fatigue I used to have is gone but my muscles still get sore. I try to push through "some pain." The pain that I currently experience doesn't seem to be "extremely dangerous" and never seems like a PMR flare is imminent.

I do think being on prednisone and overdoing it can be dangerous. When I was on higher doses of prednisone, I was feeling like there were no physical limits to what I could do. I hit the proverbial wall and felt like I was going to die. The "fight or flight" response I think was responsible for that problem. Too much exercise can be overly stressful for the body so you need to be reasonable about it.