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.
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! 🍀
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!
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
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!
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.
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
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!
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! 🍀
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!
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