Yet another flare

[Janann25]

About two weeks ago I had a really bad flare. Pain in neck, both shoulders and down my arms including my fingers. I was currently doing a VERY slow reduction from 5mg to 4 and a 1/2. So I doubled my dose to 10mg and stayed on that for a week, during which time the flare subsided. So I went back to my original 5mg with the intention of staying on that for a month before trying to reduce again. BUT, after just two days, I’m back to how I was when I first flared. So, I need to know where to go from here. Do I do the full week again on 10mg and, if I do, what should I do from then on?

I’ve had a couple of flares during my four years of PMR but this one isn’t going away. Help!!!

Jan

[PMRpro Ambassador]

There are two reasons for a flare like that - not only reducing the dose and overshooting but also an increase in underlying disease activity can do it. If it were me I'd try 7.5mg first. If you don't leave it you might catch it before it gets established - but you definitely seem to need more than 5mg. It is already what is called a physiological dose - about the same amount of corticosteroid as the body makes in the form of cortisol anyway, and many rheumies stop worrying at the 7.5-8mg dose.

[Janann25 in reply to PMRpro]

Thank you so much for your reply - I just think Ive got this illness sussed and it throws up yet another obstacle!! Do you mean to do the week at 10 then reduce to 7.5 or to do the 7.5 straight away. Sorry to bother you yet again ........

[PMRpro Ambassador in reply to Janann25]

I'd try the 7.5mg NOW, take the other 2.5mg. If it works you haven't had to go back so far.

I don't think anyone really ever susses this out!!!

[Janann25 in reply to PMRpro]

Thanks again - I’ll let you know how it goes!

[DorsetLady PMRGCAuk volunteer]

This post gives more info on dealing with flares - healthunlocked.com/pmrgcauk...

[Janann25 in reply to DorsetLady]

Thank you. I’ll save this for future reference. I’m hoping I won’t need it again but the way this illness goes, you never know!!

[Viv54]

Its such a Roller coaster, just when you think you are getting there the goal posts move ! i find after so much help from here its trail and error until you find the dose thats right for you ! I do know that its nuts to fight the pain for to long ! Slightly adjust it ., to see if it helps. Best wishes Viv x

[Avadip12]

Exactly my story , my normal does was 3. 5 I went up to 8 mg to get rid of flare. Now went back down to my usual 3.5 but like you after a week symptoms returning . So I have decided to stay on 5 mgs for the duration. I coped better on that . Good luck

[Hildalew in reply to Avadip12]

Sounds to me as if you may have found a temporary answer. From my reading on this forum and some personal experience, though not, thankfully, of flares: I think one of the key things to remember is that whatever dose you are on when a flare erupts, it is not enough and another is that the flare is probably a built up of minor remainders of inflammation that have not been dealt with over quite a while. So, when you go back up to a bigger dose and regain a pain-free state, you have probably 'mopped up' stuff from the doses you were on on the way down to the dose where you had the flare. So you need to go back down in small steps and staying at that dose, or maybe even tapering to that dose until you are really sure you are OK and then start tapering down another small step.

It's a drag I know, and really difficult if you have a GP who is insisting that you reduce more quickly. I would be rubbish in that situation so cannot advise you but you will find all sorts of strategies in posts above here and elsewhere from cannier people than I.

[Avadip12 in reply to Hildalew]

Yes thank you it has been invaluable reading other people’s experiences. My Rheumatologist did push for a lower does, and was unable to say if 5 mgs was a safe permanent does .