All this year I have been tapering extremely slowly, at about 1/2 mg. pred. per month, and I have now not taken any prednisilone for over 6 weeks. For some time I have felt stiff in the mornings, and also after sitting for some time, and I still feel fatigued most of the time, but I have no pain, which is just wonderful. None of this has got worse during tapering. I am telling people that after over 4 years of PMR I am now cured, and it is a wonderful feeling!! Some of you however might have some warnings to give me?
I hope this will be an encouragement to many of you; I know that it is different for everybody, and that some of us have had PMR for over 20 years, but many of us will recover relatively quickly. I think we would all agree that as well as the medications, our attitudes are hugely important; in this I have myself been hugely encouraged by the help I have received on this forum. I hope I will be allowed to stay as part of it.
with love to you all
Rosemary
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humlies
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Good to hear, but I’d give it a bit longer before you can say for sure your PMR is gone. Hope it has.
Would say your adrenals are still struggling and it can take anything up to 12 months after finishing Pred for them to be back to normal - so just be aware of that should you find yourself in a stressful situation.
dear friend, I would be cautious for a year or so before celebrating… I’ve been clear for nearly a year and feeling stronger and stronger and still I respect this nuisance condition as for most of us we just don’t know what caused it so it can just decide to return anytime. I have made adjustments to my food intake and drink and continue to regularly exercise, nevertheless, one never knows! Fingers crossed for you!!!
Thank you so much for this - I suppose we need a mixture of caution and optimism. I'm so glad that you are feeling stronger and stronger, and I hope this too is an encouragement for us all. I am still swimming in the sea when I can!
Swimming is one of wonders of this world when it comes to exercising!! I used to do triathlons (back in the day 🙄) so used to love swimming. Used to surf as well!! No joint impact, brilliant for aerobic well ness and stimulates muscles across the full body! Way to go!!
Indeed! Yesterday I only managed about 5 minutes since the waves were large (ish) but I still felt great afterwards. I never got to your triathlon level but still love the feeling of freedom and the feel-good factor afterwards. My village thinks I am mad to be doing this at the age of 82, but only heavy seas prevent me from going in!
Of course you can stay - especially as you are hopefully someone who got through to the other side of pred permanently! Few people hang around to tell their story so newbies only see those of us still here and taking pred!!
However - if the PMR disease activity is at a very low level it isn't unknown for it to take 6 months for any inflammation that isn't being dealt with to build up to a level that causes symptoms you can feel. Sorry! Even half a mg can act as a daily dusting.
The other thing is that the propensity for your immune system to have a paddy remains for life - luckily, second episodes of PMR are much less common than PMR itself, except in these first months after stopping pred when it isn't really a return as a second episode but a hand waving from the last one to remind us it never really went away.
All the best - do hope this is going to be just a the long slow return to normal for adrenals and muscles.
Thank you for your wise words - if only the doctors that I have intermittently seen were able to give this information, but I do realise many of them are struggling. This again is the value of this remarkable forum for which I am so grateful.
hi that’s so good to hear and thank you for sharing . I’ve been trying to reduce from 2-1 all this year and it took me until end august to get to 1 mg . I’m going to stay on 1mg until January and then do a slow taper down to 0 mg 👍.
Well that’s my plan!! Not sure what PMR plan is 🤣. It’s been a long journey 8 years but hay ho .xx
I was intrigued to see that you have 9 lives - may next year be when you transit from your PMR life to a new PMR free life! Thank you for your good wishes.
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