Recent PMR diagnosis

[Alison300356]

Hi all am new here, only diagnosed a few days ago so still coming to terms with diagnosis. Started on Prednisolone at 15mg and have to say almost immediate reaction feel so much better, although I realise this is likely to take a while if ever! before I can stop medication. Any tips would be most welcome. It all feels a bit unreal at the moment.

[Hollyseden]

Hello and welcome. You've found the right place for answers and advice 😊 I'm a newbie too and have found this forum invaluable for info. It means you go into see your doctor prepared thanks to all the good advice here.

[DorsetLady PMRGCAuk volunteer]

Hi Alison,

Welcome and have a look at attached. It may give you insight that doctors haven’t. Please come back with any questions, sure you’ll have plenty, and good luck.

healthunlocked.com/pmrgcauk...

[HeronNS]

You are so lucky to have found this forum so early. It's great that you've had such a prompt and positive response to pred.

[SheffieldJane]

Hi Alison and welcome! Everything you need to know will be forthcoming on here. For now just enjoy the relief from the horrible pain and stiffness and as questions arise just ask.

Patience is the watchword you are going to have to become bit Zen. You'll get there though. You can't race around being the old you either, you need to pace activities and rest a lot. Even though you are relieved of some pain and discomfort, it is mainly palliative ( reducing harmful inflammation) you still have a serious systemic disease. You need to design a nice life round it. I promise it can be done. Thankfully for most of us this disease eventually goes into remission.

[PMRpro Ambassador]

75% of patients with PMR are able to get off pred in between 2 and 6 years, 2 years being the exception rather than the rule though doctors seem to believe otherwise. That isn't forever although it may seem a long time now. However, if you and your doctor use pred properly you will live a pretty much normal life, there will be some things you are better off not doing but I continued to ski for several years and have travelled all over the world. You have to learn your limits and stick to them - but if you do that, life won't be that bad, I promise!

[Mitziecat]

Welcome Alison.

Good advice already given about pacing yourself, patience and using the support given from your fellow sufferers. Good luck with the journey.