Exercise and PMR

[JMT_hiker]

Diagnosed with PMR in March 2022. Started on 20 mg of Pred, now down to 8.5. I am 56 male and exercise daily with light weights and bicycle. I wake with some minor stiffness in the morning, but otherwise feel great. I worry that my exercise might be harmful based on other posts I read from other sufferers, but I believe the workouts help with overall physical and mental health. Curious what others think.

[Nextoneplease]

Hi JMT_hiker 😊

I can only say we’re all different! Delighted that you’re able to do this exercise and feel good, and that you’ve been able to reduce pred relatively quickly.

I’ve tried to exercise, but found it totally exhausts me unless I keep it really short and/ or light. The fatigue aspect of PMR is my main problem now that the pain is normally managed. So….I couldn’t exercise as you do, although I’d love to.

Whatever you’re doing, it’s working for you, so I’d say keep it up, but don’t overdo it 😊

[JMT_hiker in reply to Nextoneplease]

Thank you for the feedback and I wish you the best in your battle with this damn disease. I guess I should feel lucky for being able to do what I do. I'll try to keep it moderate.

[piglette]

Exercise is good for you. If you have PMR the important thing is to STOP if you feel any problems. Never go for ‘the burn’!

[JMT_hiker in reply to piglette]

Thank you for the feedback; this condition makes me feel I'm in a battle by myself. Hearing from others is reassuring.

[piglette in reply to JMT_hiker]

There are a lot off us around!

[DorsetLady PMRGCAuk volunteer]

It’s a matter of what suits you and your illness, and is often discussed on here - maybe have a look at this -

healthunlocked.com/pmrgcauk...

[JMT_hiker in reply to DorsetLady]

Thanks for sharing the info DorsetLady; it means much to me.

[PMRpro Ambassador]

Providing the level of exercise you manage does not leave a legacy the following day it is OK. Men often do have a different experience - I think because of the muscle bulk in the first place and if they are able to continue with an established exercise routine that also helps. You are also relatively young, Many women are older when they develop PMR and already far less fit for various reasons but are often not diagnosed for a long time. I was 5 years waiting for pred and although I went the gym almost daily all I could manage was aquafit and Pilates if done immediately after - the pain associated with movement stopped me doing more.

If you were to notice problems I'd suggest a rest day between larger exercise programmes might be a good idea but daily light weights and a short cycle ride is probably not a problem. It also very much depends how ill you get with the PMR and whether GCA is also implicated. It can have a similar physical effect to full-on influenza - and then you have a different scenario.

[JMT_hiker in reply to PMRpro]

Thank you; your feedback means a lot.

[calibriel]

Like you I’ve struggled to know what’s best. I’m 71 now, but used to swim a significant distance twice a week and regularly walk to get to places; all that stopped because of Covid (although I carried on walking a bit and exercised in the house, swimming was always my main exercise). My PMR was diagnosed during the first lockdown, and when things started to open up and I wanted to build my swimming fitness again, I had no idea what I should be doing. I was also confused by the fact that I have osteoarthritis, and I’m used to exercising through the pain, which is generally beneficial for that condition. To cut a long story short, I followed the advice of this excellent forum, and listened to my body. Now, if it starts to hurt, I stop, and I’ve been able to build up gradually to swimming a reasonable distance. Listen to the wise ones here, and I hope you find your balance.

[JMT_hiker in reply to calibriel]

Will do; thanks for replying.

[OldPenny]

Hi JMT. Good luck with your progress but also be aware that, from my experience, you are likely to hit a wall at some point and return to the symptoms that caused your diagnosis earlier in the year if you continue to push yourself physically while tapering your dose relatively quickly. We are all different but we all have an underlying inflammatory condition that requires treatment.

There is good advice on coping with a 'flare' on this site if it happens and also how to pace yourself in the circumstances and taper more slowly and effectively.

I got down to below 10mg in 5 months too, but, after a flare episode knocked me over, I am steady on 10mg pred currently after 9 months with PMR and feeling well.

Glad you're feeling great, and exercise is important for physical and mental well-being, but it's best to be vigilant too, especially as you'll soon be be reaching the 'adrenal' zone (7-5mg pred for most people).

[JMT_hiker in reply to OldPenny]

Thanks Old Penny; I think you're right, I will be careful not to overdo it.

[Janet57]

I think pacing is important. Taking rest breaks and never pushing your body too hard or it may let you know afterwards and set you back. Like others have said, we are all different, and you will get to understand how well your body is managing exercise. Good luck 😊

[JMT_hiker in reply to Janet57]

Thank you Janet for replying; other's thoughts mean much to me.

[DeepThought2]

Dear JMt_hiker - as already someone before mentioned: everyone is different and thus it is difficult to transfer own experiences to others. For me I can say that exercise - wenn I felt able to start again - had very positive effects - both physically and mentally. I was not diagnosed PMR but but GCA (larges vessels) and started to exercise again once I was at 12.5 mg pred (a level which I arrived fast as I am taking also Toculizumab). At the beginning I avoided getting into the anaerobic range when running and cycling (tried to go only up to a maximum of 130 heartbeats/minute) but then increased the exertion level gradually (and always at a level where I felt completely comfortable). After approx. 6 months I was back to my pre-disease fitness level (and could also stop pred completely) - I am now (one year and 5 months after my diagnosis) continuing to take Toculizumab (and might try to stop it by the end of this year) and I am cycling and running very regularly (approx 4000 km cycling since January). I think it is important to listen to your body and mind and do what makes you feel good.

[JMT_hiker in reply to DeepThought2]

Sounds like your doing great; I will listen to my body, and I also agree with you that my exercise is having a positive effect. Good luck with the GCA

[Koalajane]

I do not do as much exercise as you but I like to walk and my aim is to walk 13,000 steps each day. I don’t feel it hurts me so carry on.I think if you can do it then it is good for you and as long as you listen to your body you will be okay

[JMT_hiker in reply to Koalajane]

Thanks Jane; 13000 steps is a great accomplishment. I appreciate the feedback.

[pmr_nikola]

If you were exercising before PMR, there is usually a very good chance that you can restart the SAME exercise albeit at lower intensity. Listen to your body and gradually increase volume (time) first and when comfortable go up in intensity.

It took me almost a year to get back to the level of exercise before PMR. In general endurance exercise is much better for us with PMR since prednisone changes metabolic process (inhibits) muscle recovery. So be careful with heavy weights (intensity) and use smaller weights with higher reps, which in essence turns weight lifting into endurance exercise. Just a week ago I saw a post of PMR patient that biked from London to Rome in 3 weeks or so, so PMR is not the end of active life :).

[JMT_hiker in reply to pmr_nikola]

This really makes sense; thank you for responding with such thoughtful commentary. Good luck on your fight with PMR

[pammy_hyland]

I feel I am worse if I don't exercise..I don't feel there is any reason to limit it ..I have even climbed Snowdon with PMR I keep going and don't think like that at all if you feel fatigue like that maybe you should look to adjust your levels and up your steroids to a level you don't.. I have found my level and if I go under that amount and the fatigue comes back I'm usually having a flare ..I am on a maintenance dose for life now ...xx

[JMT_hiker in reply to pammy_hyland]

Great outlook Pammy! I am with you; I am going to continue to exercise and enjoy an active lifestyle as long as I can. Dropped to 7.5 mg today and hope to get down to below 5mg by September. May i ask what is your maintenance dose as I may be in the same boat.