Flare up: My first flare since being diagnosed six... - PMRGCAuk

PMRGCAuk

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Flare up

Carathedog profile image
9 Replies

My first flare since being diagnosed six months ago, I was doing ok on 5 mg, then flare, been on 7.5 for two weeks now, no change really, should I keep going on 7.5, or increase.

I’m feeling really down today, just want to go to bed and curl up, I’m usually quite active, was going to go for a short walk, but I can’t face it

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Carathedog profile image
Carathedog
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9 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Maybe the increase was not enough -who advised that? Usual recommendation is contained in attached link - just amend example according to your own circumstances -and run past GP-just in case there us something else going on -

healthunlocked.com/pmrgcauk...

piglette profile image
piglette

I normally increase by 5mg for a week or so to hit the PMR on the head. Then reduce back to a bit above the dose where I had problems.

PMRpro profile image
PMRproAmbassador

Had it been me, I would have gone to 10mg for a week. if the dose you try isn't enough, it simply isn't enough and you end up spending longer at higher and unable to drop back to where you were in one step.

If that doesn't work - you may be having a flare in disease activity rather than having just overshot.

Carathedog profile image
Carathedog in reply to PMRpro

What does a flare in disease activity mean please

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Carathedog

If you scroll through this link, you’ll find PMRpro’s explanation -

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador in reply to Carathedog

PMR isn't the disease - it is the name given to the symptoms caused by an underlying disease process and there are several. If that underlying disorder ramps up - the symptoms will increase.

Sanekate profile image
Sanekate

I was diagnosed last year and had the same experience at around the same dose. 5 days on 10mg did the trick, then I dropped slowly back down to 5.5 using Dorset Lady's taper. It has been a bit of a suck-it-and-see process - I often find it hard to distinguish between pred withdrawal and a flare. I'm holding steady at 4mg now - PMR is so far resisting any attempt to drop another sneaky half mg, but that doesn't mean it won't later. Like many people, the GP I get to see depends on where the appointment carousel stops; most don't know much about PMR and I have referred them to this forum. The advice here has taught me to be less Private Frazer (Doomed!) and more Corporal Jones (Don't panic Mr Mainwaring!) in response to the disease.

Carathedog profile image
Carathedog in reply to Sanekate

Thank you, it’s encouraging to hear people going through the same. I started 10 today, so see how that goes 🤞I didn’t really realise there was a difference in pred withdrawal and a flare, I’m learning so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Carathedog

Well hopefully my link explained it…..

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