Advice and tips on living with PMR

[GrannyJane]

Just been diagnosed with PMR and now taking 15mg Prednisolone daily.

Feeling so much better now I know what is wrong and the pain is lessened. Still can’t sleep much but not because of pain. Any advice from long term sufferers?

[MrsNails]

Welcome GrannyJane 🌸

So pleased you found us at the beginning of your journey & great that the Prednisolone is working well.

Dorset Lady will be along to say Hello in due course & will send you a link to some reading.

Please ask if you have any questions, there is an Abbreviation Guide on the Right in Pinned Posts but anything you don’t understand please ask.

Take it easy now, don’t try to overdo things.

Kind Regards

MrsN

[DorsetLady PMRGCAuk volunteer]

As threatened here I am!

Welcome, and as MrsNails said, a little light reading - a general overview of what may lay ahead.

It may be a bit daunting to start with, but hang on to it, and in a few months, it will make sense!

In the meantime, any questions, issues, comments just ask - healthunlocked.com/pmrgcauk...

[Charlie1boy]

Hi There,

Sorry to learn you've been diagnosed with PMR. I'd never heard of it before I was diagnosed, and I guess that you are likely the same.

You'll get lots of excellent advice on this forum, so just go ahead and ask. Some of your answers will come from reading other people's posts and the answers to them.

In the meantime, I would suggest you have a read of Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide". You can get it on Amazon.

Good luck, and try not to overdo things - PMR needs lots of tlc!

Paddy

[PMRpro Ambassador]

Scrolling through past posts often also provides a lot of info though there is a lot to look at!

But asking specific questions makes it easier for us - not everyone has the same problems.

[piglette]

I have learnt to love the BBC World Service.

[123mossie in reply to piglette]

Funny you should say that, I know all their presenters, regular slots etc..😴

[Polymialgia]

I think the hardest part of the PMR journey is acceptance, Pred doesn’t cure it and it’s not a relentless race to zero, you are possibly going to live with it for years , patience and rest are essential .

[GrannyJane]

Thank-you everyone, already feel surrounded with tlc and your support.

My dance teacher has had PMR for 3 years and is now down to 2.5, she gives me immense hope as I’ve seen her really go through the mill and keep going. I really love dance, Pans People style and ballet ( can’t do Pilates/ yoga anymore as I get vertigo) so ballet helps core and balance. Now everything will have to go on line again.

My main two problems at the moment, and I appreciate it is early days, can’t sleep and am developing weird rashes in weird places which are very sore. My GP is ringing me next week to ask how I’m getting on, which is generally fine but get desperately tired and my lovely husband can’t cope with “ illness” he’s trying to be helpful but still expects me to be the tornado I was before this hit!

Should I ask the GP about calcium? I have been taking vit. D for a year now plus multi fits and cod liver oil( for ever) Glad to say appetite has diminished and I can’t manage more than one glass of wine on our “ drinking days”!

Lovely to be in touch with you all, I now have a PMR family!

Best wishes,

GrannyJane.

[PMRpro Ambassador in reply to GrannyJane]

Are the rashes in body creases (so to speak)? And were they already there pre=pred?

I had rashes in body creases that broke down and presumably became infected with thrush - a nystatin/antibiotic/cortisone cream sorted them well but I eventually worked out that the rash was due to eating wheat - no wheat, no rash! At higher doses of pred the itching improved and I didn't develop the weeping level either. We (I and the local coeliac specialist) thought it might be dermatitis herpetiformis because of the way it manifested (the dermy version of coeliac disease) but decided it was most likely to be due to leaky gut syndrome and there was little point testing further as I had it under control with not eating wheat and to do the biopsies required I would have to eat wheat for at least 6-8 weeks prior and at a quantity above my usual amount. I really didn't fancy that!

[Enfin]

Hi I’ve struggled with sleep too and am currently on Phenergan (used for allergies- antihistamine (?) ) as it’s not addictive. Not perfect sleep but better.

X

[PeaceableDragon]

You have come to the right place. I was diagnosed with PMR in 2017 and my GP also placed me on 15mg at the start. The advice I received at this site helped me to understand that I was not alone in this venture.