Hi everyone. Pmr has come back 😞

[Blossom20]

So I started pmr in June '20. Had it for 4 years - finally stopped Pred beginning of July this year. I've been fine until a couple of weeks ago. I've been stressed and I suppose that has triggered it. It isn't as bad as it was before, but it's getting worse. It's worse at night - neck and shoulders and is better for moving about. It's better some nights, worse others, but definitely pmr - same symptoms I had before. I went to the doctor to get a blood test to see inflammatory markers and that will be next week. In the meantime I am afraid I think I'll have to take some Pred.

I've got some 1mg. What dose would you recommend? Do you think a short dose of 3mg?

I'm so disheartened!

[TandemTime]

Sorry to hear you are suffering once more how frustrating for you. In my case I know stress has been a massive factor (things happening outside of my control).

It seems you recognise this cause and affect in your own case. Therefore be encouraged that once the stress is relieved you will slowly be going back in the right direction, which is worth looking forward to.

Good luck. Others can advise the best dose for you. However let us know if you think you are in the middle of your stressful situation or is it fading which I hope it is for you. Time can be a great healer. Meanwhile a fresh air walk with a friend might help.

[Blossom20 in reply to TandemTime]

Thanks for your kind reply....I'm quite a,worrier and although I do all the right things, I still get in a state. My daughter is expecting! Be here soon! Pregnancy is so medicalised nowadays....trying to find a healthier way....eg iron isn't up to the required numbers. But she's OK that's the main thing!

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this. Do you have enough to take 5mg daily for a week… when hopefully you should have results back… and depending on them you may be able to drop to 2 or 3mg…

Plus would say your PMR may not have gone completely when you finished Pred - the timescale [with or without the added stress] sounds about right for the inflammation to build up enough again to cause symptoms.

You did state previously that you were on 1mg for a long time…but not how long it took you to get to zero, nor whether you went via 0.5mg to get there.Many find that 1/2mg really does make a big difference ..so maybe think about that this time around.

[Blossom20 in reply to DorsetLady]

Thanks for quick reply. I didn't go via 0.5mg because I'm using gastro resistant pred. I did it by missing days until I got to zero ( a long time and with flares). I won't get results back and get an appointment until January, so I'll have to manage.I feel fine now, just stiff - the worst is in bed...

I'll keep in touch!

[DorsetLady PMRGCAuk volunteer in reply to Blossom20]

Ahh… yes GR meds make it more difficult… just have to make the tapering much slower, but if you were flaring then maybe that was the sign that PMR was still active.

Hope you can get back on track asap…

[PMRpro Ambassador]

Hard luck. The timing suggests to me that really it had never gone - the underlying disease activity was just very low and while maybe 1/2mg was enough to keep "scooping out" enough inflammation for the bucket not to overflow, zero was a step too far and the little bit of inflammation created each day has built up slowly until you can feel it. We see it quite often - sometime it takes a few weeks, sometimes it can take up to 6 months. Obviously the longer it takes, the lower the underlying disease activity which is the good news in the bad.

I would try treating it as a flare - add 5mg to where the flare happened for up to 2 weeks and drop back to the dose above where the flare occured. As I say - even 1/2mg can be enough so you are nearly there - just, as I say so often, not just yet!

[Blossom20 in reply to PMRpro]

Thanks Pro for quick reply! Yes, I agree, so I'll try 5mg for a week. Actually I'm fine now at 11am. It was bad in bed. I had a bath with some oils, then did a stretch.My daughter is expecting in early January. She's fine but I'm worried about all the drugs they want her to take before and after a c/s. Mainly the blood thinning injections! Sent home on day after! When I had her I was in hospital looked after for a week!

[PMRpro Ambassador in reply to Blossom20]

The injections are fine - I had to use them a few times post ops, Not a c-section in the UK but fairly sure it was normal in Germany even 40 years ago. UK doctors sneered after my broken leg but a few years later there was a study which basically said it was pretty much medical negligence if they weren't given!! Which is what I had told the GP who refused to give me them and told him if I developed a DVT I'd sue him.

[PMRpro Ambassador in reply to Blossom20]

Oh and PS - maybe 1mg a week would do it when you get back down that low?

[Louisa1840 in reply to Blossom20]

Sorry to hear you're probably experiencing a return of The Beast! We all, I am sure, give thanks for this amazing forum and all the wonderful advice and support we find on here. Imagine life without it?

My daughter is a very caring midwife and she often says they don't give drugs unless they have to. Be grateful (even though it goes against the grain) that your daughter will give birth to a healthy baby and that she too will be fine because of all the wonderful aids we now enjoy. Once you're cuddling that gorgeous baby you won't give a toss for the drugs it took to bring her into the world. Love conquers all.......

Best of luck on the 5mgs......We will tame The Beast one day!!!

[Charlie1boy]

The second time I got to zero I lasted fine for 108 days, then the PMR started to creep back.

Without any consultation, I went back to 3mg for a week, and then to 2mg where I stayed for about four months. Finally, I got back to zero again after a year of being back on pred, and I’ve been fine ever since for the last two years or so. PMR does like to take its time!!!

Good luck.

[HeronNS]

Having been in a similar situation I concur with those who think a higher dose than 3 mg is probably warranted. Better to hit it hard and fast rather than finding you didn't take enough and having to go up further and then in the end taking more than you might have.

Cautionary tale: In 2020 I came off pred - for about six weeks! When starting again I pussyfooted around with 2 mg, 1.5 mg, etc. For months. This despite bloodwork which actually showed increasing inflammation markers. Kept telling myself it was just osteoarthritis. Finally in January, with markers higher than they'd ever been, I took 10 mg. Took many months to get back down to what had been my previous lowest best dose (about 2 mg). Even had to change the time of my dose (to middle of the night from morning) as the higher dose wasn't lasting 24 hours, which had never previously been a problem. Now, had I been smart in mid 2020 and just accepted it for what it was, maybe I'd have skipped all those months of useless low dosage, and subsequent need for a dose I'd not taken since early days 2015. In the end the flare never properly subsided until quite late 2021 (coincidentally? after first Shingrix shot) and it wasn't until February this year (2024) that I finally achieved remission.

[Spazzy55 in reply to HeronNS]

Wow, what a journey!

[Brooklyn747]

I'm so sorry for all who 'nearly got there' and then they didn't. It surely must feel a little depressing. So unfair, but in essence that's p.m.r. a real downer. The good part of the story is the excellent advice given promptly and generously on this site. Ain't we the lucky ones!

I've tapered to 2mgs and have tried but not successfully to get to a slightly lower dose, talk about were in for the looong haul. We will eventually get there and then party hard...woo-hoo! Good luck to everyone 💓