Just when you think its all over 😂: Things been... - PMRGCAuk

PMRGCAuk
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Just when you think its all over 😂

Things been going really well from beginning of the year been feeling more human had bloods done in may result normal CPR levels Hooray whoop whoop.

But now for the sting in the tail I get down to 1mg of pred all was good then wallop bang wallop CPR levels creeping up so pred put back up to 10mg reducing every 6 weeks by 1mg, just a vicious circle.🤪

13 Replies
oldestnewest

I feel your frustration. I only got to 5 and it all went back to the start. Up to 9 now hoping to hold on that.

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Hi

Sorry to hear that but would say as you’re about 2 years into PMR maybe you were expecting too much.

Your CRP levels should be normal- that shows the Pred is keeping the inflammation at bay - doesn’t mean the PMR has gone!

Recent studies show median timeline for PMR is 5.9 years not 2 as so many doctors still tell us.

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Dorset Lady

My blood levels are fine, so the pred must be working; then why do I still have pain? Such a mystery to me.

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Couple of reasons maybe -

Unfortunately not everyone gets 100% pain relief,

Some patients don’t have raised markers - did you pre diagnosis?,

For some the blood readings lag well behind the symptoms.

As you say - a mystery.

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And maybe you are trying to do too much. Your muscles remain intolerant of acute exercise - do too much and you are likely to suffer DOMS more easily than you are used to and it will last longer too.

Amd some may not be PMR.

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Me too, back at 7mgs. Not going to risk going down until stressy Christmas is done with me. All my trouble is in my knees. I think I caught it from mamici1.

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It's not over until the fat lady sings......and I'm not in a musical at the moment sorry (and before anyone panics about me running myself down, I have two bodies, my normal one and over the top I wear my pred body which looks like I'm wearing a fat suit). I'm on my 3rd attempt to get below 10 🤦

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Same here :-(

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:-)

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Yes more like a 'merry-go-round' than a 'slide' in this particular 'Fun Park'. I am at 12 mg and my CRP is slowly creeping up (again) so I am stopped on this 'horse' for the ride and just know reducing more is pointless - even silly as the inflammation (using PMRpro's analogy) is like a 'dripping tap' and just keeps building up in the background without adequate Pred. Sometimes it just seems so seductive to think that as we are tapering down we are simultaneously 'getting better' when really we are just looking for the lowest dose to control the inflammation - which can go on as DL says for several years - not the two we might all hope for ... But regardless we must try to enjoy the year(s) we are in !! Have a lovely 'Festive Season' and all the best for 2019 !

Rimmy

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Sorry - I know it is disappointing. But why hadn't the CRP been checked since May? Just because it is normal doesn't mean the PMR is gone, it means you are on enough pred to stop the inflammation building up.

You almost certainly didn't need to go back that far - adding 5mg to the dose at which the flare occurred is usually more than enough - especially if you weren't having any symptoms. CRP doesn't only rise is response to PMR. it may be more reliable than ESR but still isn't a certain guide. The usual recommendation is not to increase the dose as a kneejerk reaction to raised CRP unless there are accompanying symptoms but check the CRP weekly to see if there is a trend.

You are never reducing relentlessly to zero, the fact you had got to 1mg without problems certainly suggests you need under 5mg at present so probably could reduce faster than 1mg every 6 weeks, straight back to 5mg is OK if you had only been on 10mg for a few days and won't waste all the work getting your adrenal function awake if not up and running.

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Just in case it helps, I took eighteen months to come down from 15 to 0, had 6 months off and then flared, went back to 5mg and took 6 months to come down. Have now been off pred for eighteen months and no symptoms either. It does happen!!!! Good luck with yur journey!

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I yo yo'd up and down a few times don't be disheartened it does happen .

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