For the last 3 days I have been at 0 prednisilone. I am no worse that usual. I have thought for a while some of the issues I have are not actually PMR but a side effect of steroids or the condition or just something else. I have tapered slowly and just want to check if going fro. 0.5 to zero may cause any withdrawal effects. I feel quite tired but to contextualise that I have done the washing been shopping and been out for brunch.
Just wondering if there are any symptoms I should expect as I start on my zero journey. I have been on steroids for two years and two months almost to the day.
All advice and experience sharing welcome
Julie
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JulieR2
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If your PMR has truly gone, then no you shouldn’t have any problems.
You may find other pains arise- which were previously masked by Pred, and your body does take time for all things to return to normal, particularly your adrenal glands - which may be why you feel tired.
When I reduced I did the very slow taper from 0.5mg to zero, and didn’t notice any particular change in things. If you went from 0.5mg one day to zero the next you may find your body objects.
However your PMR may not be gone completely, I hope is has, so just monitor yourself over the next few months, and if any recognisable symptoms returns don’t try and tough it out!
Thanks so much I did go quite quickly from 1 to zero so will just see how it goes. I am trying to work out what is normal now and wether I have still got PMR or if I am after all this time still in denial. I will
Hi Mary I always feel a bit stiff around my neck and left shoulder. I drive an hour each way to work and often quite a lot in between so I have had regular massages in the last two years to help with shoulder and neck tension. I also have a stiff bottom again left had side which goes down my leg. ( I think this may be Piriformitis.) I also had bursitis in my hip a couple of months ago. So have have been trying to work out what is PMR and what is other things. I was unwell for probably 8 months before I was diagnosed. I had been feeling great on 1 mg but again all the above was still present it never got worse or better.
Like everything else to do with PMR - no hard and fast rules!
It is felt it takes up to a year for the adrenal function to get back to 100% so that needs bearing in mind if you have an accident or illness. That is why the advice is to carry a steroid card even after stopping pred.
Hi JulieR2, I have no comments to help having never gotten to zero; however, your post is very interesting nonetheless because it is another step in this journey that we all will take, and reading the experience of those who go through it before me sets me up for success! Thank you & wish you well.
Good news. Hope you stay well. I had to do 6 long car journeys recently and had pain from buttock to heel down my right leg. I did and am still doing the leg exercises. Pilates. And I bought a cushion for the car seat. You can get special sciatica cushions. All this has worked for me. I also just invested in a new mattress. That's helped not just helped but eradicated early morning stiffness.
You are inspiring me. I have hesitated to taper to 2.5 from 3mg., but think I will take the leap to-morrow and see how it works out. In tapering, I am aware that before I had PMR, I had hip deterioration and arthritis, so I try not to attribute every pain to PMR
After almost 3 years finally this week at zero. Still have very small amount of shoulder pain which painkillers deal with and a strange ache in legs but feel so much better and can walk for miles now. I really hope this is it ( but who knows what this condition may surprise me with!)
That’s interesting to hear, that is slower than the DSNS method? Maybe that’s why I’m feeling so much pain going from 4-3.5mg. Must be too fast? Thanks so much for raising this 🙏🏻
Nothing is slower than the DSNS method - it all depends where you start and how long you rest at the new dose before trying the next step down. Once you are at 5mg then you need to go slower and slower for success.
Really pleased for you Julie. Well done! It's great to hear a success story, and keeps us all hopeful. So glad you got through the adrenal scary bit that we are all dreading. Shows it can be done!
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