I am new to this site: I was diagnosed with PMR two... - PMRGCAuk

PMRGCAuk

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I am new to this site

6 Replies

I was diagnosed with PMR two years ago but have only just discovered this site. I have managed to get down to 4mgs Prednisilone daily with just a couple of flare ups on the way. I am so much better than I was but still feel a bit of a 'woose ' on occasions if I don't feel as hot as I think I should. However I intend to stay positive particularly after reading many of the comments on this site.

6 Replies
polkadotcom profile image
polkadotcom

Well, welcome June and congratulations on getting to so low a dose. Never mind opting out at times - I think we all feel like that on occasion. Positivity is key to dealing with all this stuff, so you are well on the journey we all have to make.

I do hope your smooth ride carries on.

PMRpro profile image
PMRproAmbassador

Why should we always have to feel "good"? I'd give my eye teeth to lock the door and curl up in a corner on many occasions...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi June,

Well done on getting down to 4mg - that's an achievement in itself! Don't worry about being a woose somedays, we can't be on top form every minute of every day, so don't try to be!

Don't know how you are reducing, but if not already doing so, try a slow tapering plan and 0.5mg at a time.

Good luck.

Therealsue profile image
Therealsue

It's good to know that other people have bad days. Quite frankly, the other day I felt like I'd been run over by a bus! but the next day I felt much better.

Jackoh profile image
Jackoh

Just think you have done so well. Found we just have to concentrate on the positives and on the occasions where it's more difficult then that really just shows that we're normal!! ( or sort of , in my case!!) Keep up the good work and welcome to the site! Xx

mzz70-70 profile image
mzz70-70

Welcome to this site June. Its been a godsend for me and like you did not discover this forum until this year after being diagnosed with PMR 2 years ago. You are doing well and we all get the odd flare up and feel grotty some days. You are not alone. As Dorset lady has said in her post, do not taper too quickly. I did and it got me nowhere and in a lot of unnessersary pain. I managed to get down to 1mg of pred, felt o.k but not brilliant then to my surprise my Rheumatologist said I should stop the pred altogether and just take painkillers......Big Mistake, felt dreadful and that's when in desperation as to what to do I found this marvellous site. With the help of so many and realising I had stopped way to soon a visit to my GP was needed and she put me straight back on 5mg Pred. That's where I am today and the tapering for me will be very slow in future. Painkillers are rubbish, only Pred for PMR. Good Luck......Mazz

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