Excercise and PMR

[Richard170356]

Thanks to everybody who replied to my first post. Just knowing you’re not alone in this is reassuring. I seem to have a fairly moderate case of PMR compared to a lot of people on this site and have been able to do a reasonable amount of excercise including a 3 mile run once a week. Does anyone know if I should be doing this or will it aggravate the condition. I started on 15mg of pred in April and have already tapered to 8mg. My GP has told me to reduce by 1mg every 6 weeks so I should be clear by next July. Is this realistic or am I likely to have a flare?

[DorsetLady PMRGCAuk volunteer]

Exercise is good… but you still have be careful not to overdo things. How do you feel after you run… that day and the couple of days afterwards?

As you say, you may be luckier with your PMR than many on here- but you should be aware that now you are approaching the dose where your adrenals need to start working again, and that sometimes makes things a bit more difficult.

So to that end, maybe don’t assume that current taper regime will go as smoothly it has to date. …and it’s always a bit risky to fix an ending date in your mind…

As we often say, listen to your body in respect of tapering etc …not your eye on the calendar… your PMR doesn’t…

Link regarding all things adrenals -

healthunlocked.com/pmrgcauk...

[gingerraspiller in reply to DorsetLady]

Sound advice. I was doing very well until I hit 3.5 mg .... I had to extend my time at 3.5 mg until I felt better. I have found it takes me longer at each dose now...... 3.0 mg and now at 2.5 mg. I have stopped looking at "the end" and am now focusing on the now and not kicking myself into a flare. Getting the adrenals going is definitely tough. I am continuing to exercise - pickleball, walking, yoga but this has definitely been the toughest part of the journey. Hang in there everyone!

[PMRpro Ambassador]

If you feel OK - then it is OK, but be careful about trying to increase, if you do, do it VERY slowly and never forget the rest days which as equally as important as the exercise days.

My only criticism is your identifying a date to be off pred altogether. It doesn't always work like that! You are not heading relentlessly for zero - you are titrating your dose to find the lowest effective dose, the lowest dose that gives the same relief as the starting dose did. It is the other way round from the usual procedure for that, usually you start low and go up, that doesn't work very well in PMR as you always play catch-up to some extent.

You have done really well getting to 8mg without a problem - but you might find there is a hiccup at any dose, it could 7,5, it could be at 1mg, or anywhere inbetween. Even 1/2mg can make the difference between good and not good. And as you get lower, your adrenal function will also soon need to sort itself out even after such a short time on pred.

Take it week by week - sometimes even day by day and you will be fine. But don't set your heart on a specific date to be finished with pred. That might end in tears.

[marionofnorwich in reply to PMRpro]

Yes i would reiterate what others have said. I fairly coasted through the first 18 months and got to 4mg at my own self managed pace until i got Covid. Then it all went haywire. The last 18 months have been difficult. It is definitely tougher once you get under 8mg

[alangg]

I absolutely agree with other replies; you have reduced quite quickly from 15mg so it's possible that you only need a low dose to control the inflammation. But if you reduce past the 'required' dose, you are at risk of a flare meaning you will need to increase the dose to control it and then start reducing again.

No more than 10% reduction in dose seems to be the recommendation which worked for me using a 4 week tapering plan each time and leaving a week or two between finishing one taper and starting another. I used a pill cutter and different dose pills to keep as close as possible to the 10%.

[pmr_nikola]

Exercise actually help with PMR. It helps replenish nutrients to muscles and prevents muscle loss. It is important to do it as often as you can with 1-2 days of rest in between same kind of activity. Helps if you find alternate activity to running in order not to stress the same muscle group too often.

Keep in mind that PMR restricts blood flow to muscles and connective tissue and be aware that connective tissues injury are not uncommon with PMR and exercise. About a year into PMR journey I stretched one of the ligaments in my knee, and my running days were over. I am still active, but I do biking and swimming ( which is why I suggested to add alternate sports to your schedule).

As far as pred, nobody knows how long will you take to zero. It took me 1 year to get down to 6mg and another 6 years to get to zero. Your reduction steps should not be more then 10% of the dose, so you should think of reducing now in 0.5mg steps. Hardest part is ahead of you. Just listen to your body.

[Polygolfer]

Hello! I do a lot of exercise too! 3 or 4 rounds of golf every week, gym every other day etc. Key in my opinion is to listen to your body, it will let you know if you are doing too much, but if you’ve always been active I’d say keep it up! I do without any problems at all.

[SpaghettiWestern99]

Hi Richard

I’m a few months behind in terms of taking meds. Like you I’m fortunate to have receded with the pain symptoms and I can exercise regularly, albeit not with the same intensity or duration. I’m finding exercise to be physically and mentally beneficial, however I’ve not found a stable level which works or started to taper on the meds. I guess it’s going to be trial and error.

As a newbie to this forum one thing I’ve noticed is a lack of success stories where people people come of Pred in a reasonable time, without complications or flares. I’m assuming this is because those cases don’t need the support?

[DorsetLady PMRGCAuk volunteer in reply to SpaghettiWestern99]

As a newbie to this forum one thing I’ve noticed is a lack of success stories where people people come of Pred in a reasonable time, without complications or flares. I’m assuming this is because those cases don’t need the support?

You are correct, they probably don’t need support, or maybe they just join and read but don’t comment. Plus in many cases (whether a good or bad experience) they don’t stick around afterward but just leave to get on with their lives.

But there are success stories and some do hang around.

For example I had GCA -and after a very sticky start due to misdiagnosis -got through it with no flares -and been in remission now for 7 years.

[SpaghettiWestern99 in reply to DorsetLady]

Thanks @DorsettLady, it’s proves there is hope!!!

[DorsetLady PMRGCAuk volunteer in reply to SpaghettiWestern99]

There most certainly is -but early days it’s not easy to recognise that , never mind believe it.

[Viveka]

I think what will happen in each individual case is unpredictable. However 'moderate' does not neccessarily mean quick. My GCA was described as 'light' with the implication if things went well I would be one of the lucky ones who got off pred within 1 to 2 years. This was by a very well thought of rheumy. However it has proved to be a longer road than we expected. Also at the lower doses it can become more hairy with the impact of adrenals and stress having more of a role because of less pred.

My learning is that it is important to balance exercise with rest, eat well and keep a positive mood; hope for the best without setting any definite timescale, but don't be surprised if there are glitches too.

[Orange_2022]

I play it by ear - I had to stop most exercise before I was diagnosed (untreated PMR for nearly 5 months) and put on Pred. It had an instant effect at the initial higher doses (15/12.5/10mg), however, I'd lost a lot of fitness after stopping gym (twice a week), yoga and occasional (1 mile) run for several months.

I'm now back to everything but after a couple of flares realised that when I feel tired I need to rest and skip the exercise for a few days (apart from some walking which is usually fine for me). I'm down to 6mg of Pred now so think my adrenals are waking up and that gives me some days when I need to have a nap in the afternoon! Gradually building up again but being careful as I can feel I'm not as strong as I was, so I don't push it as I might have done before.

So I'd carry on if you feel OK, but if there are times you feel tired or feel any symptons of PMR, don't exercise for a day or more.

The thing that also caused me problems was tapering too fast. I'm being VERY cautious now, using 5-7 week tapers, and am sticking with 6mg for a while after having quite a few issues getting below 7.5mg previously. Good luck!

[Miserere]

Initially I zipped easily down from 15mg to 7mg and then, out of nowhere, a flare. I had two more flares at 6.5mg and then at 5.5mg. Just because you've been able to quickly tapered at the beginning doesn't mean that it will continue that way with the lower doses. I now use DL's taper and .5mg at a time - now back to 6.5mg. I've learned the hard way - once down to 7mg take it more slowly or you'll find out all about it! As the dose decreases you may also experience steroid withdrawal (achey symptoms that begin soon after a reduction) or adrenal stuttering (which, for me, means fatigue). Take your time and good luck. This journey is longer than I wanted it to be too.

[Mansplainer101]

FWIW...

I began on 13mg/day last Sept., after being hit overnight with a crippling bout of PMR (I could not even pull up my trousers in the normal fashion because I could not bear pushing my elbows backwards which is required when you pull up your trousers. )

I am now down to 1.5mg/day.

Almost daily, for the last month or two, for about 1hour and 10', never exceeding a heart rate of 105bpm (my resting HR is 51bpm) I row on a rowing machine and have observed no deleterious effects as a result.