My mum is 88 with PMR and I want to advise her. - PMRGCAuk

PMRGCAuk
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My mum is 88 with PMR and I want to advise her.

Kirklasu
Kirklasu

Hi,

My mum has polymyalgia and over more than 12 months has been reducing to 1 mg but recently took up chair exercising ( she is 88 yrs old) in addition to her walks. She began to get stiffness and didn't know if this was as a result of the chair exercises. I think from reading other people's posts today that this is quite likely to be the cause. She has had her blood tested and the doctor has put her back onto 15 mg and she is so disappointed and all the bloating on steroids makes her feel ' not like herself '.

She does suffer from fatigue and has not had the reasons for this explained or even linked with the condition. It has been useful for me to read that this is linked in these posts. At least I can now explain this to her.

I think I must tell her to give up the chair exercises and stick to the walking but moderate it and not go too far. On her birthday she walked 7 miles with me and loved it. I now think this could have been part of the cause of her relapse as she had just taken up the chair exercises and then went of the long walk.

Mum loves walking and loves being outside and loves meeting up with people so the chair exercises were good on many levels but probably too much for her.

I have also noted that very slow reduction of 0.5 per month is advisable to prevent relapse. I note on another website that doctor guidance is 1mg per 3 mg per 3 weeks (or something like that). I will advise my mum of the slower method as relapse is so frustrating for her.

If I've misinterpreted anything please let me know. I may have my units ( mg) wrong but I think Imcan be understood.

Thanks

13 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi Kirklasu,

It sounds as if your mum has been doing too much for her condition. I understand she wants to keep exercising, and I think many of us younger souls would be amazed that she could manage a 7 mile walk with PMR.

I would say she'd reduced below the level of Pred that she actually needs, and that is at fault for her relapse as much as the extra exercise.

Yes you do need to maintain exercise, but your muscles are not as resilient as pre PMR and therefore take longer to recover, so one day exercise (gently) next day rest.

I’m a bit surprised her doctor took her back up to 15mg - if she was down as low as 1mg. I don’t think he understands her illness very well. He’s been trying to reduce her much too quickly 15mg to 1mg in 12 months is suicudal - I’m surprised she hasn’t flared before. The Pred is only controlling the inflammation caused by the PMR, it’s doing nothing for the PMR itself- that’s a serious systemic illness.

And yes, you really need to be at each dose for about a month to ensure you have your inflammation under control before you taper.

Have a read if the attached, if you understand your mother’s illness you can help her. She’s lucky to have you.

healthunlocked.com/pmrgcauk...

Please come back with any further questions.

Kirklasu
Kirklasu in reply to DorsetLady

thankyou so much DorsetLady for such a fast response. I'm seeing mum tomorrow

PMRpro
PMRproAmbassador

I think her doctor has panicked - adding 5mg to the dose she had been on would have been a better first step to see if that was enough and what many top rheumies suggest as a start. I'm sure there is no reason why she couldn't now drop quickly to 10mg - if it isn't enough then she can always go back up.

I think you are right - just too much all at once, do the chair exercises and half the walk maybe? But does she REALLY need the chair exercises when she can manage 7 miles! It's more than most of us who are 15-20 years younger can manage a lot of the time! The getting out is far better for her than the benefit of exercises on a chair inside.

"doctor guidance is 1mg per 3 mg per 3 weeks" - that's a new one on me. You reduce what YOUR body says you can reduce - YOUR body, not mine, or the neighbour's or anyone else's. A basic rule that does work is no reduction being more than 10% of the current dose. At 10mg that is 1mg maximum, at 5mg 1/2mg. Then you can help by spreading it out over a few weeks to get from every day one dose to every day the new dose.

You have obviously been reading us - would your mum agree to cut carbs and salt in her diet? Both will help the bloating she finds so unpleasant - tell us about it!

If you have any specific questions - just ask.

Kirklasu
Kirklasu in reply to PMRpro

Thankyou and I will update you

Not much to add, I agree she has reduced too fast. And she probably doesn’t need to be back at the starting post again.

If she was good at 5mg, hold it there a while. My MiL started at 12.5 in 2002, only ever reduced to 5mg and stayed there until 2016 (when she died of other causes).

Goodness me! 88 and walking 7 miles, more than I can do at 57. I was celebrating a 2.5mile walk this week! I don’t think I’d be letting a piddly dose of pred worry me at age 88 and still mobile.

And the carb cutting really does work.

As for the chair exercises, yes I absolutely get the social side. Make sure the instructor knows about the PMR, and get her to moderate/adjust as needed. Maybe just do half of everything to start with and build up. That said, I bet she’d manage the class much better on a reasonable dose of pred.

Kirklasu
Kirklasu in reply to Soraya_PMR

thanks for such encouragement Soraya

Others have said it all. Just wanted to add that your mum sounds amazing and clearly you are cut out of the same cloth. Stick with us.

I will do, you're all so lovely and helpful

God bless you both. It seems he already has, so may the blessings of having each other continue.

Hidden
Hidden

Others have said everything but I was shocked at the 7 miles. I am 56yrs and have a few different conditions but definitely say it was June 2000 that I last did any sort of walk like that. If I overdo the walking I might as well stay in bed 3 days cos my legs would be painful and dead.

Low carb food would help. There are lots of internet sites that have suggestion. I use a couple of books for veggies. A low carb veg cook book, a low carb dessert book and a very simple book from diabetes UK (who support low carb) called carb and calls by cheyette and balolia. I am not in a commission and I like the idea that they have 3 pictures of cornflakes in 3 portion sizes and tell you the carbs and cals. Then different portions of milk with carbs so you can weight and measure and know exact cals and carbs. At the moment I like my unsweeted jelly for pudding which is zero carbs.

Kirklasu
Kirklasu in reply to Hidden

Thankyou Poopadoop, that's really helpful. I've enrolled my mum on this group now. We went for a gentle walk today, so we won't do 7 miles again. We'll look at the low carb diet. Mum is feeling much better knowing all this information and has a much better understanding now.

PMRpro
PMRproAmbassador in reply to Kirklasu

It has just occurred to me - the chair exercises are repeated similar actions and possibly sustained movements I assume? When we walk on a treadmill there are often similar problems. It is all down to the fact that during natural walking we constantly change our position, speed, stop and look, turn to look - and that relaxes muscles in a way that "exercises" or the treadmill do not. Encourage your mum to do which she prefers - but maybe mix up the chair exercises a bit more. That may help.

Kirklasu
Kirklasu in reply to PMRpro

Thankyou for this helpful information. I have told mum about it

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