Can a flare improve with rest: Hi, I have been... - PMRGCAuk

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Can a flare improve with rest

SunshineJSM profile image
14 Replies

Hi,

I have been tapering off Pred for almost 2 years. I have had a couple of flare ups on the way but I’m now down to a daily dose of 2mg.

I’ve had a very active and busy few weeks which I knew were coming so I have not reduced for over a month.

Unfortunately I think I am now having a flare. I am so close to getting off Pred I am reluctant to increase the dose and I wondered if anyone has been able to overcome this with rest rather than increasing Pred dose.

Thanks

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SunshineJSM profile image
SunshineJSM
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14 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You won’t know until you try…but unfortunately if the inflammation is allowed to build up, it will get worse…That’s why we always say, catch it quick, and you may only need to increase a little.

As you are on small dose, you may only need an extra 1mg - or even 0.5mg, surprising how much difference it can make….

So for the sake of a such a small increase, take it - your PMR may have more life left in it than you realise…. No one has told it, it only lasts 2 years…

SunshineJSM profile image
SunshineJSM in reply to DorsetLady

thank you

Charlie1boy profile image
Charlie1boy

I think you’ve done very well to get down to 2mg after barely two years. If it was me experiencing flare symptoms at this stage, I would be following the standard advice for treating flares, which you will find in the Frequently Asked Questions section of the forum. The last bits of the taper can take very many months, even years in some cases!

I have posted on a number of occasions on here that you need patience, more patience and more patience still with PMR. Yes, you need lots of rest, and that does help, but the PMR will only go into remission when it is ready to do so.

Good luck.

SunshineJSM profile image
SunshineJSM in reply to Charlie1boy

thank you. Lots to think about

SnazzyD profile image
SnazzyD

How is this flare brewing presenting itself? Is it exactly the same as before?

Personally I have found it not to be a good idea to judge how close the end is by looking at the raw numbers. It can end in tears because the apparent small gap from 2 to zero is not the same as how long it takes each 0.5mg drop to be tolerated.

SunshineJSM profile image
SunshineJSM in reply to SnazzyD

yes same as before. I know I need to listen to my body but been hoping that this time I would get off Pred completely.

Thanks

SnazzyD profile image
SnazzyD in reply to SunshineJSM

Is there anything that links your flares?

SunshineJSM profile image
SunshineJSM in reply to SnazzyD

not that I can think of.

But I have been very busy over the last few weeks so might have over done it.

SheffieldJane profile image
SheffieldJane

I think rest really helps but once the inflammation takes hold you do need a bit more Pred.

SunshineJSM profile image
SunshineJSM in reply to SheffieldJane

thanks

PMRpro profile image
PMRproAmbassador

"I am so close to getting off Pred I am reluctant to increase the dose "

I fear it isn't that simple an equation. You are seeking the lowest effective dose - not necessarily just ploughing a straight furrow to zero. That lowest dose can be as little as 1mg, even 1.2mg, if the underlying autoimmune disorder that causes the inflammation is still active. You having developed a flare now suggests it is.

However low the activity, if you stop pred or even go slightly too low, over time the left-over inflammation that isn't being cleared out each day will build up over time until there is enough to cause symptoms again - you can even end up as bad as you were before pred. And then you need a lot more pred to sort it out.

If it is just a flare due to too much activity, then adding 5mg to your current dose for up to a week may clear it all out and you can then drop back to the previous dose of 2mg. It won't affect your current taper or your adrenal function at all. But even if that works, I wouldn't taper from 2mg for a while afterwards either - just to make sure the 2mg isn't marginally too low and allowing the flare to happen.

There is also the possibility that this is DOMS - your PMR-affected muscles are protesting at the activity you have asked them to deal with. If it is DOMS (delayed onset muscle soreness) only rest will deal with that until the muscles heal the microtears that cause DOMS and cause the training effect in the longer term. That may take some time and is the reason we warn against over-exertion at any stage of PMR.

piglette profile image
piglette

Up 5mg for a week to hit the PMR on the head you can then drop back to say 3mg for a few days and see if that is OK, before getting back to where you were.

SunshineJSM profile image
SunshineJSM

thanks. I think I’ll give that a try

keeptalking profile image
keeptalking

Whatever you decide regarding your pred. I would definitely recommend rest to help your body recover from over exertion.

Since reaching zero 4 months ago I have taken myself to bed (usually only an hour) whenever I feel I’m struggling. I find it’s been my answer to restoring life quality. My new slogan is when I want to reach for the pred. I put myself to bed. 😂.

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