A bad flare

[Hollieby]

My hubby has PMR, had it since 2019. Last night he had the worst flare ever. He was on 5mg of Prednisolone, and since 2am this morning he has had to take 18mg to get some relief. When he has had flares before on 5mg he has only ever had to take another 3mg, totalling 8mg, to get himself back on track. He has never had to take this many before, and this still hasn’t got him fully under control. Has anyone else had this problem, or can anyone offer any advice. Thanks.

[TheMoaningViolet]

This seems somewhat extreme - how about calling a doctor?

[Hollieby in reply to TheMoaningViolet]

Because you have to jump through hoops and almost impossible to speak to any doctor, if not fully under control by tomorrow will go down that route.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear that, has he done anything recently that could have made this a particularly bad flare….

Usual advice is to add 5mg to last dose he last felt okay, so bit surprised he’s needed to go as high as 18mg this time. Although only one day is hardly time to give the extra to work….perhaps he needs a few more day to get a truer picture.

Am a bit concerned that you say he seems to flare regularly…unfortunately the more that happens, each time it becomes a bit more difficult to get things back under control. So perhaps he needs to have a think about managing his illness more carefully.

This link gives advice on how long to stay at higher doses and how to get back down.

healthunlocked.com/pmrgcauk...

Perhaps you should also look at this re adrenals, they may be causing an issue as well - healthunlocked.com/pmrgcauk...

[Hollieby in reply to DorsetLady]

He has managed himself basically since the start, no support from the doctors, only ever seen a rheumatologist once for a test for his adrenal function, but on the whole he has managed it pretty well. It is only when he has got down to 5mg, which has been on for the last year that a flares have sometimes happened, but none as bad as this. He had not been feeling too well for a day or so, but then yesterday played a round of golf! So whether it was a combination of these that brought this on, who knows! I have now got him a phone call with our private health provider doctor, tried our own doctor only to be told, we would have to do a health consultation and probably won’t even get a reply till next week. I just hope whoever he speaks to has some understanding of this awful condition. Thanks for replying.

[PMRpro Ambassador in reply to Hollieby]

Sounds more like a little flare compounded by DOMS (delayed onset muscle soreness) from the golf. And DOMS won't really respond well to pred, just paracetamol and time.

[Hollieby in reply to PMRpro]

Not sure about that as he plays golf weekly, and never has any aches or pains from that, but thanks.

[PMRpro Ambassador in reply to Hollieby]

Mmmm - but he isn't hatching a flare every week. Plus - if this is happening at a similar level all the time, maybe he's just a smidgeon lower than is ideal and it just keeps slowly building up until it registers as a flare.

[agingfeminist in reply to Hollieby]

I am still wondering about this regular round of golf...that's pretty amazing for someone on 5mg to control PMR. You are expecting the golf to be immediately followed by aches and pains...the inflammation can build up more gradually. I wouldn't want to remove this obvious joy in his life but yoyoing with pred doses is not good. Perhaps he needs to try a couple of months without golf to find his optimum pred level and then go very very gently. We all need so much patience with this disease...and of course when the symptoms are controlled by pred we think we are no longer ill. As long as we need a dose of pred we still have this wretched disease. Would you go and play a round of golf if you had flu? Gently, gently might help but as others have said a serious flare is serious...please demand some attention from your doctor.

[PMRpro Ambassador in reply to agingfeminist]

Or accept a marginally higher dose of pred to be able to keep quality of life and golf.

[agingfeminist in reply to PMRpro]

Yes... difficult and important decisions. Sometimes not easy to decide on the trade off.

[PMRpro Ambassador in reply to agingfeminist]

I happen to think that the QOL is as important as anything else. It is one of my reasons for refusing totake statins for example - I've tried 2 and both made me feel worse than unmanaged PMR despite a load of pred - the first scared me to death - I was almost in a wheelchair! There is no point living longer if I feel that ill ...

[agingfeminist in reply to PMRpro]

QOL is everything! But it is a very individual decision about what constitutes QOL.

[PMRpro Ambassador in reply to agingfeminist]

For most golfers it appears to be being able to play ...

[Hollieby in reply to PMRpro]

I am really sorry to hear that, sending you my best wishes.

[Hollieby in reply to agingfeminist]

Thanks for your advice, this disease just always seems to come back to bite you just when you think you have it under control. We are members of PMR U.K. and he did call them yesterday, but when things like this happen it would be great to be able to speak to a doctor who has full knowledge of the disease (as even when you can speak to a doctor, they often know nothing about it). Don’t know where we would be without this forum, and our local group, completely in the dark. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Hollieby]

Golf and adrenals probably added to another flare. But as I said, if he keeps stuttering at the same level he does need some proper medical advice. So good luck with that..

[Hollieby in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

I'd be concerned it isn't "just" a PMR flare. Pred isn;t really something to use like a painkiller - it won't work immediately quite often and that encourages you to take more than you really should. Otherwise - everything DL said.

[Hollieby in reply to PMRpro]

That’s why he can’t understand it as it usually works within a couple of hours so maybe it is something else, hopefully the doctor will be able to help tomorrow, fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Hollieby]

Does sound something other than purely PMR-please let us know…

[Purple-Owl]

A flare? A flare might be any number of symptoms. What are they?

[cranberryt]

A sudden onset of pain like that doesn’t sound like a flare but something else. For me, flares are a bit of a slow build up. I agree with others that it’s more likely the golf is causing something and a doctor can check things out to see what it might be.