New to PMR Community

[Ferbow]

Hi have joined this for my elderly mother. She has PMR and has been on prednisone for 9 years with all the side effects this drug can have. She is back down to 8mg but feeling the pain again

[SnazzyD]

Hello and welcome. Well done for trying to find out more!

It would help to have a few more details. What side effects do you mean? When you say pain, is this exactly as she had before diagnosis and where is it? What dose is usually helpful and using what sort of regime ? Finally, what does her doctor say in all this?

[Ferbow in reply to SnazzyD]

She could hardly move getting in and out of a car became impossible . Lifting clothes onto the clothes line was hard. It was only when the discovered she also had Giant Cell Arteritis that PMR was diagnosed. She went from doing walking over 3kms twice daily to barely able to move. She is better now but still gets pain from outbreaks . Her skin is as thin as tissue paper so cuts etc are a issue . Also swelling ankles from fluid. She is only a little woman but her weight is also very low now too .

[Constance13 in reply to Ferbow]

I'm afraid this is not an unusual story. Truly sorry to hear about your Mum.

I am 81 and have had PMR for nearly nine years and much of what you have written I have had/still have (only have PMR though).

I take 4mg of Pred per day and when the pain is bad (especially) in the night) I take Cocodamol (I have very aggressive OA too).

Rest is all I can advise. The skin is not unusual at our age - also losing weight - age is something we can't predict (although when we are younger we think we can).😏 Mostly we think "It won't happen to me - I'm strong, agile and 'determined".

My regards and fellow feelings to your Mum. She is lucky to have such a supporting daughter.

All the best and good luck. 🍀🍀🍀

Constance

[PMRpro Ambassador]

And it would be lovely if you put the info Snazzy mentions onto your profile page - a bit of history about how the PMR appeared and was diagnosed and treated is always handy for later questions ...

There is a sizable group of us with what we have started to call Long PMR - why should Covid get all the notice! I've had PMR for over 15 years, been on pred for 11 but I have no identifiable problems as a result. My rheumy here says long lasting PMR is not unusual but it is unusual to be able to get to a lower dose than I manage.

[cazhew]

Welcome to this group. Im new and its amazing.xxxx

[Coffeebeans]

Welcome and lovely to see you joining to help your Mother.

I'm new to this compared to some of the members on here

[Bcol]

Good morning Ferbow and welcome to you and your Mum