Advice for a flare please

[mamma1027]

Hello all.

So here I've been, jogging along nicely for the last three weeks on 20mgs of pred and doing very nicely when out of the blue on Thursday I was hit by what I can only assume is a full-blown flare - bilateral pain and stiffness on the same scale as when pmr initially hit. It's knocked me for six, as you can well imagine.

I had to take to my bed by Friday afternoon, and was there all day yesterday. I took my usual 20mgs yesterday morning, but by lunchtime I decided to take another 5mgs. Had a sleepless night, but definitely feel less stiff this morning, though still have pain. Not wanting to stay up on 25mgs, today I have taken 22.5mgs to see if this is enough. My question is, from others of you who have suffered flares, how do you go about treating and coping with them? Do you up your pred, and if so for how long roughly?

In my last post, I said that the lovely locum who initially diagnosed me has left my tapering up to me as he recognises that only I know how I feel, but how long should I wait before going back to see him?

Thanking you all in advance for your invaluable advice xx

[PMRpro Ambassador]

If 25mg is barely containing your symptoms I personally would be back at the GP and asking "Are you sure?" How did you respond to the pred originally? Was it dramatic and result in 70% improvement or so within a week maximum? If not, it is possible that the PMR symptoms are symptoms of something else and further investigation is required to rule the options out if it hasn't already been done - or at the very best, you are very atypical and a second opinion from an expert might be called for. Flares of PMR rarely appear at that level of pred unless you are in the process of reducing, in which case it could be the dose reduction was simply too much.

[mamma1027 in reply to PMRpro]

I had a fantastic respinse initially, within 36 hours all my stiffness had gone. I was put on 30mgs abd then a very raoud taoering schedule, but after much tweaking, and then seeing the original gp who diagnosed me, he has put me in control. I haven't reduced since seeing him, so this has cone out of the blue. I am atypical as I am 49 and have normal esr and crp levels. I have been refered to a rheumy, but there's a 26 week waiting time, so I'm looking at November at the earliest :(.

[PMRpro Ambassador in reply to mamma1027]

In that case - have you overdone it in the last few days? It is all too easy to do when you are feeling good on a higher dose of pred since the pred can also make you over-optimistic about things! What a shame you got the right drug but the wrong treatment - once you drop and have a relapse it is often more difficult to reduce afterwards as I know to my cost in the past. I assume you are now reducing VERY slowly!

[mamma1027 in reply to PMRpro]

I probably have over exerted myself in the last week - husband was away and an emergency plumbing problem arose which necessitated me clearing some bathroom stuff for the plumber to gain access. And yes, I am reducing very slowly. Have been on 20mgs for nearly four weeks, had intended staying on it for another two weeks at least before coming down by 1.25mg. I have a copy of the reducing plan you posted to me just over a week ago. In your experience with flares would you try 25mg or 22.5mg for a while, and if so for how long before getting back down to 20mg? I greatly appreciate your invaluable advice PMRpro. Many thanks to you. Please excuse any typos -I'm using my kindle and keep mashing the keyboard!

[PMRpro Ambassador in reply to mamma1027]

In that case I would rest more and give the dose you are on a chance for a few days first. Really it is a case of managing it all with both medication and lifestyle changes. PMR makes your muscles intolerant of acute exercise (never mind the chronic variety) and it does take much longer to recover after overdoing it. So the idea is to become a "Precious Princess" (description trademarked by Lizzie!). Then you are likely to find you recover better. Emergencies happen - but next time tell the plumber you are sorry but you can't lift things because of severe arthritis - could he possibly help you.

[mamma1027 in reply to PMRpro]

Thank you so much for your advice. Hopefully with a few days rest and tlc I'll get back on track. Pnr drives you nad though doesn't it?

[mk14 in reply to mamma1027]

I'd reiterate the advice re telling the plumber you can't move stuff. Even when you've negotiated changes in lifestyle with nearest and dearest, my experience was that in 'out of the blue' situations, I'd somehow act as if I'd forgotten my limitations and not want to look feeble in front of strangers. Also so few people have heard of PMR, saying you've got severe arthritis (or a muscular problem as I started saying) is easier for people to understand. Good luck