Running and PMR

[Tabby124]

Thank you to the PMR community for all your advice since I was diagnosed with PMR/GCA in 2020. It has kept me going, I have reduced pred to 1mg a day (on a good day) I have started a fitness regime to lose the weight that I gained on pred. My symptoms are getting worse since exercising. Should have stop. I’m so grateful to get to 1mg and don’t want to make things worse and end up on a higher dose

[DorsetLady PMRGCAuk volunteer]

Hi,

Maybe you are trying too much, too soon…you need to build up very gently especially if you haven’t been exercising throughout - and sounds as if 1mg is probably not quite enough …so maybe just an extra mg might make the difference..and have a read of this re exercise -

healthunlocked.com/pmrgcauk...

[Tabby124 in reply to DorsetLady]

Thank you. I will read the link

[SnazzyD]

Hello, can you be more specific about your pains? It’s worth trying to work out if you are suffering from simply over reaching your physical condition as it stands or if it is a flare. Getting back into shape after PMR/GCA/Pred isn’t like getting back to exercise after a bout of flu; it is often harder and more frustrating. Add whatever effect of the vasculitis and the Pred and deconditioning, post exercise pain and strains can be a problem. How much have you worked up to this regime or gone straight into it?

[Tabby124 in reply to SnazzyD]

Thanks for the advice. The pains are like PMR pains. I’ve embarked on the couch to 5k programme. I’ve done two runs so far and feel like I need more pred which is what I don’t want to do.

[DorsetLady PMRGCAuk volunteer in reply to Tabby124]

As you are increasing your activity, then you may find that the Pred is not enough to cope with it -so don’t let it get any worse or you could end up with a full blown flare.A very small increase now may save a bigger one in weeks to come - it’s a matter of weighing up the options!

[Tabby124 in reply to DorsetLady]

Yes. I’ve done nothing since pre diagnosis 2 years ago. Feel so lucky to get to 1 mg so don’t want to push my luck. I’ve got to realise I can’t do the same exercise I used to do pre diagnosis.

[DorsetLady PMRGCAuk volunteer in reply to Tabby124]

No you can’t, but you can build up slowly, and get back to being fit…just takes time.

[SnazzyD in reply to Tabby124]

I found my body changes were unlike anything else I’ve been through, including chemo. Perhaps halve your exercise plan in terms of times, or distance. Aim very low and build up.

[Tabby124 in reply to SnazzyD]

Yes will do. Got to accept my body isn’t what it used to be.

[PMRpro Ambassador]

You can't just dive into exercise - you have to get into training and the loss of condition during PMR and taking pred is considerable. You have to start VERY small and build up very slowly. You will get back to it - but not by rushing in like the proverbial bull in a china shop.

[Tabby124 in reply to PMRpro]

Thank you PMR pro. Agree I have been thinking all systems go. The couch to 5k app doesn’t account for an illness and have felt under pressure to push myself as it sends me alerts every day. Slow and steady from now on

[PMRpro Ambassador in reply to Tabby124]

Really, just start with 10-15 mins walking right at the start, then increase by a few mins every other day until you can feel it on the rest day - and stick there to train for a bit. Build up the distance you can walk before even thinking about adding in the faster bits of couch to 5K

You really CAN'T run before you can walk

[Tabby124 in reply to PMRpro]

Thanks all so much for the advice. I really appreciate it. Will build up slowly and listen to my body and take things at my own pace.

[SusyTe]

Tabby, if you are concerned about the weight gain and can’t currently exercise as much as you would like, it might be worth trying 16:8 Time-Restricted Eating - it has helped me get down from an 18 to a 14 again. There are no gimmicks or extra cost - you just eat within a certain timeframe. If you are interested, there is a great book on it called Delay Don’t Deny.

[Tabby124 in reply to SusyTe]

Thank you SusyTe. I have tried 16/8 and found it to be good. Will look out for book.

[SusyTe in reply to Tabby124]

Hope it helps, Tabby. X

[Pawscat11]

Dont know if this helps but my consultant doesn't think running is helpful after long term pred and PMR unless you were a runner and very athletic before and suggests walking quickly instead as weight will still be lost not not the joint and muscle impact.

[Tabby124 in reply to Pawscat11]

Yes I did wonder that. Will keep to a gentle jog on grass and see how it goes. I wasn't a runner before PMR more of a gym goer - cross training and exercise bike. I may be better with that.

[DorsetLady PMRGCAuk volunteer in reply to Tabby124]

Yes you might, but just be a bit careful about repetitive exercises -PMR doesn’t like that very much. Better if you can do a variety of different exercises so not putting too much pressure on one set of muscles.

[PMRpro Ambassador in reply to Tabby124]

I found the cross-trainer in the gym awfully hard with PMR, Too repetitive. Bike wasn't that good either. Both went for my thigh muscles in a couple of minutes!

[Judyliz]

Hello Tabby124I was diagnosed with PMR in May 2016 and GCA in September 2016, I am using DSNS method of reducing and am down to 3.5 mgs of prednisolone for the second time. "Only the second time I hear some of you say".

I started C25K during the glorious weather of first lockdown when I was at about 5 mgs. For the first time, hmmm.

I have been a life long walker and practiced yoga for over 20 years. I think of myself as flexible and fit so starting C25K would be a doddle, right?

Wrong.

I followed the app instructions and loved the first 2 weeks but by 🏃3 of week 4, I knew I had a problem and had developed shin splints.

What I realised when I read instructions, "properly", was that my warm up and post run exercise regimes were cursory at best but in reality useless.

The instructions are excellent and you can tweak them to suit you as a beginner.

There is no reason why you couldn't start by just walking a route you like and gradually increasing your walking pace. It doesn't have to be 5k, it can be as short or long as you find comfortable and enjoy. Try different times of the day and if you have a friend keen to do something similar I find I don't notice the distance so much as we natter along the route.

Undoubtedly, PMR and all the side effects and ramifications of our condition can mean we are more prone to injury if we embark on a new physical regime. Also we are all of a certain age and need to plan and prepare carefully and properly for something like this.

IannodaTruffe is to C25K what Pmrpro is to this group. He is highly knowledgeable about all aspects of running and incredibly aware of his responsibility when answering and advising etc. They also have lots of facts lists to peruse similar to what our wonderfully organised Mrs Nails has done here.

Having said all that I did decide to stop running as it took 6 months for the shin splints to heal and I do prefer having someone to chat with. None of my walking chums were interested in running and my wonderful neighbours who run are all at least 30 years younger than me, run like the clappers and return hot and sweaty. That was not my aim.

Anyway, I wish you well with what ever you decide and please let us know if over time and with careful planning you decide to have another go.

[Tabby124 in reply to Judyliz]

Thank you Judyliz. Its interesting to hear your experience and will up the walking part if I feel its getting painful. This is the first time I've done any exercise two years so will build up slowly.

[PMR2011]

Getting to 1mg within 2 yrs of diagnosis is pretty darn good. Agree with the others, you don’t want to push too hard, and if you have to increase Pred probably won’t make any difference in side effects at such a low dose. Better than a flare and having to go higher! I’ve been on Pred for 10 yrs and have continued exercising throughout. On higher doses...gentler exercises such as walking on flat ground. On lower doses (4 or less) I run, but no more than a mile. With nicer weather it is hard not to overdo it!

[Tabby124 in reply to PMR2011]

That's good to know. My instinct was to think excercise would make things worse but think just have to get the balance right.

[HeronNS in reply to Tabby124]

Walking is better for your bone density than cycling, an important consideration when on steroids. In fact walking is probably the best all round exercise when starting to exercise again after a break. It gets you out in the open air, into natural light, which is good, too. Like they said, start slow and work up. If you can, aim for a few minutes every day. All the best!

[Tabby124 in reply to HeronNS]

Thank you. Yes agree getting out in the open air is good

[LemonZest11]

Just as an aside and perhaps something else to think about, years ago, way before PMR/GCA/pred got me, I used to be a runner. I was always getting injuries, mainly ankle and/or knee. Eventually my physiotherapist son referred me to a sports/exercise physician and he told me that, apart from a very few cultural groups (think Africa), humans were not designed to run. He said to stop and change to fast-paced walking. Running for the vast majority of humans will always be problematic. Something to consider, I reckon.

[HeronNS in reply to LemonZest11]

Hmm, I wonder? You just have to look at a human being and understand that the long limbs are designed for rapid movement - I'd suggest moderately paced long distance running, not extremely rapid sprints. Is the expression "persistence"? Personally I've found that fast walking is very hard to do compared with running. Not that I run these days, but you know what I mean. Try walking as fast as you can for a few minutes, then break into a slow run. The slow run is a relief! I actually had some fun with this on my "dreadmill" the other day. Got the speed up, walking all the time, and walked like that for a few minutes. Then, without altering the speed on the machine I started to run, It does something different, and I find it less stressful on the muscles, although harder on the breath! I do strongly believe that running on hard surfaces, as city dwellers do, is very hard on us, as, to a lesser extent, is walking!

[LemonZest11 in reply to HeronNS]

Just passing on the words of a specialist in the field. I agree about the treadmill, fast walking on one of those is horrendous, very different to outdoors, natural surfaces. Anyway, all the best!

[HeronNS in reply to LemonZest11]

I've long noticed the running is easier versus fast walking effect outdoors. I mentioned the "dreadmill" it because it was sort of a test I recently conducted for myself.