Loads of questions. I'll start with main question.

[Stroppymoo]

Got diagnosed recently with PMR and on the preds. Feeling wonderful. So, I'll be on a tapering system. Was wondering, are there any people who can suffer indefinitely? I just dread those pains for the rest of my life. I'm a mere 54.

[DorsetLady PMRGCAuk volunteer]

Hi stroppymoo,

Glad the Pred is working for you.

Don't be in too much of a rush to start reducing, the Pred needs to get the inflammation under control (which it obviously has as you're not in pain any more) but, just as importantly you need to continue to take enough to keep it under control as you reduce. That's where people come unstuck sometimes, if you reduce in too big a dose or too quickly time wise the inflammation is not kept under control, so you find you get your pains back.

As for how long you'll be on it - you might as well ask 'how long is a piece of string?' - everybody is different, and it's not a matter of take a course of tablets and it's gone like some illnesses. PMR has a life of its own - it's comes when it wants to and goes when it wants to! Some people have it for a couple of years, some a lot longer.

I think you have to say to yourself, I have this thing called PMR, not sure how long I'm going to have it, but I'll do my best not to let it affect my life too much. I realise I may have to adjust my lifestyle to accomadate it, but I'll keep it under control by being sensible about what I do.

Sure you'll be back with many more questions, in the meantime - take care.

[annie_marie in reply to DorsetLady]

Hi Dorset lady.

Just to say, you give good sound helpful advice. I'm new to this site, sadly not pmr/gca along with several other chronic illnesses, but I wish I had been in touch with a group of people like yourself a lot earlier. I will try and get in touch with the local group to me (east anglia ) for support in the rest of this journey, in the meantime I will follow the forum for any news. Thanks. A

[piglette]

PMR tends to go into remission in around two years plus, although there is a chance it may come back, but not too high. I believe fifty per cent get over it in around five years. It does seem that those who rush off pred very quickly are more likely to get a relapse than others, although I am not sure if there is any research to back this up. The chances of you having the pains for life are close to zilch.

[Hidden]

Heartily recommend 'polymyalgia Rheumatica and Giant Cell Arterits: a survival guide' written by Kate Gilbert 🤓

[Stroppymoo in reply to Hidden]

Got it and on last chapter.

[Sheribrim]

I successfully reduced the preds slowly and stayed on 2mg for around 6 months, then at Christmas I got influenza. PMR came back with a vengeance.

I had to go up to 20mg before I killed the pain in hips and so I am now reducing slowly. I'm now on 9 mg daily and I believe the honest answer to your question is that it does go but can return if you are not 100 per cent healthy. Keep away from anyone who is ill!!! Be selfish !!! Be lucky !!!

[enen]

Mine also came back after a bout of flu but was in remission for 5 years

[Stroppymoo]

Thanks people, sorry I don't do long replies (feeling guilty for that), but my concentration levels are not too brilliant - and I think that's menopause and not PMR.

[PMRpro Ambassador in reply to Stroppymoo]

Could be PMR or pred - or all three! It will get better.

I've had PMR for over 12 years and it hasn't gone away in that time but I have had 2 major flares and one minor one. As long as I take the right dose of pred I'm fine and it makes little difference to my lifestyle really. I first had symptoms when I was 51.

[enen]

I had GCA aged 51 on Pred for 18 months and then remission now have PRM at aged 56. Few years in between of feeling healtyish. I say healtyish as I am a shift worker which I dont think is good for me.