Could I be cured?: Normally I'm on here complaining... - PMRGCAuk

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Could I be cured?

Peggles profile image
7 Replies

Normally I'm on here complaining about feeling dreadful and yo yo ing my pred, but for a WHOLE WEEK now I've felt OK. Good even. Better! Last time I felt like this (on 12.5 pred) I collapsed after 4 days and had to go back up to 15, then 14 and now back to 12.5, and 12. But I'm being so super careful in pacing my self.

Could I be better? I'm 51 and when I was diagnosed in December my dr did say that whilst I might have to take steroids for years, I might get better in months.

My CRP is 1, my ESR is 2.

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Peggles profile image
Peggles
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7 Replies
SheffieldJane profile image
SheffieldJane

I really hope so Peggles. It would be unusual but not impossible. Proceed with great caution as you well know. Enjoy it though, it is an oasis of respite whatever.

Peggles profile image
Peggles in reply toSheffieldJane

Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Peggles,

So pleased you're feeling good!

Are you cured! Really don't know, but I think PMRpro wrote on here somewhen about different forms of PMR, one being a short term illness that affected some rather than the usual long term version we're all used to hearing about. I'm sure she'll correct me if I'm wrong!

Until you get confirmation either way, as SJ says enjoy the feeling, but don't get carried away.

Peggles profile image
Peggles in reply toDorsetLady

Thank you - can't believe it, and just thought I'd put it out! Will progress with tapering s at a snails pace and remember to spend as much time resting as possible, but some cyclists have posted on here about cycling, and some skiers too, and they seem to have got things under control which has given me hope.

Plus I seem to have my stress under control

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPeggles

Good! I think the stress factor is very significant.

Keep well!

PMRpro profile image
PMRproAmbassador

The only way you can know if the PMR has gone is if you can reduce down to zero and stop without symptoms returning. I feel great on 7mg - but the PMR is still there, I can tell as soon as I try below 6mg where I feel OK.

As long as you are on enough pred there should be no left-over inflammation and your blood markers should be normal - they are a measure of proteins made by the liver in response to inflammation in the body. The way you feel now means you can safely try another SMALL reduction. Ideally you would reduce in tiny steps until you get twinges and then stop and go back to the last dose - if you are lucky that point will be at a very low dose, even zero. But it could just as well be at 10mg. You can't tell until you get there.

As for exercise - try a 10 min walk and see how you feel next day - and if you are fine try a bit longer, rinse and repeat. I can walk happily for hours at my own pace and on reasonably level ground - mountains are a bit different! If you cycled before - try a 5 minute ride on the same basis, preferably no hills at first! But you must build up SLOWLY, just add a couple of minutes each time and have a day inbetween to start with. Once you know what YOUR limit is you can play about with it.

Margaret1951 profile image
Margaret1951

Don't want to put a downer on you but please don't get to excited yet, when you get to the 7 dose fingers crossed for you. I wish you luck with it.

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