Hi I cannot believe my

[Lori23]

Hi my pmr has come back I can't believe it, but it doesn't seem as severe as last time.,has this happened to anyone else 😕☹️

[PMRpro Ambassador]

That really is bad luck - if it is any consolation, everyone I knows says the second time was nothing like the first. And they tended to be more laid back second time around.

I know a few people who have had it a couple of times - don't think any of them are on here but I'm sure there are others.

How long is it since you got off pred the first time?

[Lori23 in reply to PMRpro]

Hi thanks for your answer makes me feel a lot better. Its been about three years now since I finished my preds. I've still to have a blood test, but I know it's pmr, everything is taking a long time now can't just pop into the surgery lol.

[PMRpro Ambassador in reply to Lori23]

No - you aren't alone! Something is telling me that I have seen that about 1 in 10 patients has a second go at PMR. Sometimes it is just a few months - i.e. the PMR was probably just lurking waiting to lull you into a false sense of security - and sometimes it is years.

[Lori23 in reply to PMRpro]

Thanks that sounds good, let's hope it doesn't last to long 😊

[Swim2swim]

I had 8 years completely clear . Then it reappeared 2 years ago... I was tapered off, too quickly , and was too slow getting apt with GP so now started treatment all over again.

[Theziggy in reply to Swim2swim]

Is it as severe the second time around?

[PMRpro Ambassador in reply to Theziggy]

Everyone I know who has had it twice says the 2 episodes were totally different in almost every way - but not that the first was harder than the second, no hard and fast rule there.

[Swim2swim in reply to Theziggy]

Well, not quite as bad once I realised What it was! But this latest flare was not good should have gone to GP earlier.... I’m responding well to treatment , & have a GP who seems up to date with everything!

Also I am one of those people whose blood tests always come back “within normal limits”.

[Lori23 in reply to Theziggy]

I haven't had blood test back yet, I took a couple of preds yesterday and it eased the shoulder pain I had. No it's not as bad as last time, so I'm not really sure until I get blood results.

[Lori23 in reply to Swim2swim]

That doesn't sound very good, I'm waiting for blood results, there taking for ever everything is on a go slow a the moment lol 😷

[Margaret1951]

I think we all have these flare ups , I have had so many myself always going down on the preds. Good luck it goes again soon

[Lori23 in reply to Margaret1951]

Thanks I hope so 😊

[Clammy65]

Unfortunately, mine came back with a vengeance. Been on pred since February and have tried to taper off but got down to 7 and started having pain again. Of course, I just thought I would ignore it and tapered to 5 then 2 and was right back to 10. I'm on 9 now and see my doctor next month to see how things are progressing.

[PMRpro Ambassador in reply to Clammy65]

Only since February? PMR lasts a minimum of 1 to 2 years and only 1 in 3 are off pred by then.The median duration (time for half of patients to get off pred) is more like 5-6 years. Sorry ...

[Lori23 in reply to PMRpro]

My blood test all clear and pains all gone now it's a mystery lol

[Clammy65 in reply to PMRpro]

Yes, I understand how long PMR lasts. I had it for two years before. I was trying to communicate that it isn't necessarily easier the second time around.

[PMRpro Ambassador in reply to Clammy65]

That's OK - was just a bit concerned you had maybe expected to be at a much lower dose/off pred by now since you mentioned tapering off.

No - everyone I know who has had it twice says the 2 episodes were totally different! Sometimes easier - but not necessarily ...

[Lori23 in reply to Clammy65]

Got results of my blood test all clear, my pains have all gone it's a mystery lol

[Clammy65]

Good for you.