I appreciate all the helpful responses about everyone’s tapering experiences, thanks to all who replied.
Seems like at 20 is where going slower starts. I will try to get some 1mg from the rheumy, s didn’t think I needed it yet.
I appreciate all the helpful responses about everyone’s tapering experiences, thanks to all who replied.
Seems like at 20 is where going slower starts. I will try to get some 1mg from the rheumy, s didn’t think I needed it yet.
I am sure that’s why I have never flared. Good luck!
Hi Mstiles - this tapering thing can sure be more complicated from some of us than others - despite the method used or even the 'speed' of the taper. I have taken things VERY slowly with 0.5mg tapers every fortnight but struggle (with return GCA symptoms) to get below 15mg after 18 months - where I see some others are around 5mg in less than a year !! -though I realise that is not 'typical'. But we are all individuals !
All the best
Rimmy
It sure is Rimmy! I started on 40 mg in January and have only managed to get to 22.5 today. Wish I’d found this site a lot sooner! Some symptoms I thought were flares were probably withdrawal or pred symptoms. Live and learn I guess.
Thanks for the good wishes.
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Yes can be disheartening when you read what others have gone down to and as you say we are all so different and not always typical. I found it so hard to get below 18 mg. I'm on 16/15mg at the moment but often get breakthrough pain in the ears and glands(GCA) so I'll just have to see if it settles down which it often does. It is hard Mstiles to know what's going on. I think it is us just getting to know our own bodies as we are so different and trying not to get inpatient or disheartened which isn't always easy. It's also about having a quality of life isn't it as we continue on this journey so if we need more, we need more.
I have just read some of your previous posts Jackoh to get some idea of your 'progress' and time frames of reductions/flares etc. I can see in retrospect how your PMR 'morphed' into GCA - or maybe it was there from the beginning and wasn't picked up. You actually got to quite 'low' doses at one stage I see - and then have like me been puzzled at times by re-emerging (possible) symptoms. I also haven't got those very 'helpful' inflammation markers altho my ESR could have been quite a bit higher than in my pre-PMR/GCA days - but I never had such a blood test then - so hard to tell what would be 'normal' for me - it can only ever be 'relative' and possibly still 'normal'. One really useful thing about this forum is being able to chronologically read people's posts and 'see' what eventuated - and in your case TWINS grandies !!