Learning to live with PMR

[Orange_2022]

My PMR started with strange stiffness, as if I'd been riding a horse, around the hips and buttocks in April/May 2022. I ignored it as far as possible, trying physio with no success. It was when I did the Dales Way in Yorkshire in June/July that I realised my fatigue, slowness and trouble getting over styles wasn't just ageing! By this time my arms and shoulders were seizing up and my whole body couldn't do what it used to (walking uphill, running, yoga, gym, cleaning the shower, picking things off the floor!)

Around the same time, some dental treatment requiring 2 days of steroids resulted in an immediate 'cure'. Finally when I saw a rheumatologist in September and told him this, he diagnosed PMR - I'd never heard of it! Had no signs of inflammation from the blood test and was started on 15mg for 2 weeks, 12mg for 2 weeks and I'm now tapering down 1mg a month.

The posts I've read have been so reassuring and useful - rheumatologist and GP have given slightly varying advice so it's good to have this source of experience to come to for specific issues. I did wonder if stress and cold had an impact - and it sounds as if they do. I'll be less inclined to rush the tapering as a result of what I've read too.

Thanks to everyone who contributes - I wish you all well!

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome

Stress most definitely, most on here would agree it was part of their life pre diagnosis…..not so sure about cold per se…alough it does have a detrimental impact on people with or without PMR.

Maybe have a read through this - and remember tapering is apt to get more difficult the lower you get, so don’t just plough on through ignoring any return of symptoms etc -

healthunlocked.com/pmrgcauk...

[Orange_2022 in reply to DorsetLady]

Thank you! That's really appreciated.

[DorsetLady PMRGCAuk volunteer in reply to Orange_2022]

You’re very welcome…

[PMRpro Ambassador]

Hi and welcome! We do our best

[MiloCollie]

brilliant insight. You’ll get lots of advice on here. 1mg a month is reasonable but not always possible. When you get to 4 weeks see how you feel. Don’t be scared to stay put for another two weeks even. Also if you have a stressful event or holiday stay put until it’s over. I did this for every holiday and my daughters wedding. You’re doing well already. Keep going. X

[Orange_2022 in reply to MiloCollie]

Thank you! I've seen that recommendation about stressful events so useful that you think the same - will take that advice!

[Miserere]

Mine started exactly the same way - tight glutes as though I'd been horse-riding, gradually slowing walking pace, then stiffness in hips and then shoulders. Certainly there had been long periods of stress before diagnosis - just goes to show how much damage that can do. I'd been walking the north Yorks coastal route just before this and I had never heard of PMR before.

This sight has been a fount of knowledge and re-assuring information - so welcome! At least you know you are not alone. Take care.

[Orange_2022 in reply to Miserere]

Interesting ... very similar to me then, including the staggering around Yorkshire! And it's not that I've ridden very often! I also went through quite a lot of stress about the time mine started. Thanks for your message and hope all goes well for you too.