Fingers Crossed Off Pred At Last!!!! - PMRGCAuk


17,904 members33,163 posts

Fingers Crossed Off Pred At Last!!!!

Attic profile image
31 Replies

Hi everyone, I have had Pmr for six years and a bit, with all the horrible ups and downs and disappointment of failed reductions.

My last reduction from 1mg has gone like a dream, after numerous attempts and I finally took my last Pred two days ago.

At the moment all ok, but how long do I have to wait until I can safely say I am in remission. I can't believe it might all be over at last.

Jenny x

31 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Well done!

A few months probably just to make sure - but do remember the normal aches and pains of normal life previously masked by Pred are liable to come to the surface. Plus of course you are 6 years older - so remember that as well.... so don’t assume every niggle is PMR.

Attic profile image
Attic in reply to DorsetLady

Thank s DorsetLady, I am over the moon. Thought the day would never come. Better not get too excited though.

Jenny x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Attic

I know it a cliche - but like most things you just have to take one day at a time - and enjoy!

Attic profile image
Attic in reply to DorsetLady

Thank you x

HeronNS profile image
HeronNS in reply to Attic

I was at zero for a few weeks and, sadly, my returning niggles were definitely PMR. I think if this happens you'll be pretty sure. If you have doubts, put it down to the other causes mentioned! 🍀

Charlie1boy profile image

That's really good news for you. Let's hope the dreaded PMR keeps away.

I'm nearly six years in, and did the first twelve days of October at zero before I thought I'd better take a bit of pred again, but the niggles may have been because, as Dorset lady says, I'm six years older!

Good luck to you.


Attic profile image
Attic in reply to Charlie1boy

Thank you Paddy x

123-go profile image

Well done!

Meggsy profile image

Hooray! 👏👏

Casia profile image

Lovely to hear such a positive story at the start of the day! Well done! I’m tapering to 0.5 as I write. 🤞

Choco-Holic profile image
Choco-Holic in reply to Casia

That’s great x are you completely pain free or any niggles? I’m at 1.5 and occasionally have a tightness around the very top of my thighs (not like first PMR symptoms) may me just muscle weakness off steroids (who knows!) good luck on your reduction x

Casia profile image
Casia in reply to Choco-Holic

No niggles at all though it’s my second attempt but I do feel the PMR is in remission as my inflammation levels are very low too. I had a hip replacement 3 months ago but I have developed gastritis recently which I do think might be caused by a combination of drugs/steroids. Good luck and remember to go slowly no matter how keen you are to reach 0!

Oumaof2 profile image

Great to hear Attic.... 🍀🍀 As DL says, one day at a time... Good luck x

Lacelady profile image

Fantastic news It gives us all hope

Good luck with the rest of your life. 🥳

Snnib profile image

Thats great gives all of us hope. Keep well

Lori23 profile image

That's brilliant I know how you feel, after a while you forget you ever took preds, enjoy your freedom 😉

DianeA1 profile image

YAY! Please do keep us posted about how you progress!

All the best

Whitner profile image

Yay Attic! Such great news!!!

HeronNS profile image

Fingers crossed for you. Long may this last! It's a great feeling to be free.

Joan-E-D profile image

So pleased for you. Hope you can stay at club zero. I've been lucky to stay in remission for almost a year now after 3 years of PMR. Hope that encourages you. Good luck.

PMRpro profile image

Difficult to say - it's another day at a time thing I think, enjoy it while it lasts and hope it lasts a very long time. One friend managed to get to zero for several months before it came back bit wasn't on pred for very long the next time and I think she felt fairly well the second time round Another was fairly sure her second episode was as a result of over-doing things and not looking after herself (after 4 years of freedom) so resolved not to do that again! She's been off for years this time

kulina profile image

Congratulations!!!!! May you stay at 0!

Jackoh profile image

👍👍 Long may it continue 💐

Songbird69 profile image

Fantastic news. So happy for you.

Mlangston profile image

Well done you! Like you I had my last dose after a 6 year battle but I remember I didn’t feel absolutely normal again for the next six months, fatigue being the main issue. However that has gone now and I have now been in remission for 4 years and life is really great again. So congratulations for getting there!

-LJ- profile image

Just hitting my 2 year without prednisone mark! As someone said, we’re older when we get off, so sometimes it’s hard to tell if it’s old PMR or just aging! Some days are more fatiguing than others, and some days weird pain comes on. I just take a couple of advil and I usually feel just fine (probably arthritic!). The first 6 months or so I think we all probably are paranoid about it coming back. I no longer feel that way! I think I went from so active to resting a lot for 2 years that I lost a good deal of strength and stamina. Most has returned. Good Luck! 🍀

Bern435413 profile image

That’s fantastic, well done! Such a challenge for six years but hoping you stay PMR free from now on x

LindaB-66 profile image

Well done you! I’ve been on this journey 4.5 years and feel I’ll never get off the roundabout! Just had another relapse recently so went up to 6 for a week and now back at 4 ....... it is so uplifting to hear that it can be done! Has lifted my spirits!

PMRpro profile image
PMRproAmbassador in reply to LindaB-66

Not necessarily a relapse - probably just overshot the dose you need for now.

LindaB-66 profile image
LindaB-66 in reply to PMRpro

I think you might be right I just need to keep telling myself slowly slowly! I should know by now not to rush!!

Attic profile image
Attic in reply to LindaB-66

Hi everyone, thank you so much for replying to my post about coming off Pred. It really meant a lot to me.

As you all now it has been a long journey with loads of pitfalls along the way and I have been on Pred for six years.

I don't know what I would have done without you all and I will continue to drop into the Forum from time to time to see how you are all getting on.

Take care,Jenny x

You may also like...