My dose was increased to 15mg by rheumatologist as I experienced a flare. She told me to me to reduce 1mg every 4 weeks. However I again experienced either pain/withdrawal - not sure which.
I decided tostart your plan, beginning
at 1 day new - 4 days old. Etc.
when I reach
4 days new can I start on a further reduction of 1mg.
Its going well so far - am at one day new, one day old..
sorry if I'm being a bit "thick. "
Best wishes. Ann
No - you're not being "thick" at all! In fact - if anyone was thick it might have been a doctor who thought a reduction at the rate you went at would work!
I think it is probably something you need to try for yourself. I am very sensitive to steroid withdrawal pain and I am scared of a return of the PMR pain and disability (it's happened too much in the past) so my version is extra-slow. If you feel well at a given point - here 4 days new dose and 1 of old as you say - then there is no reason why you couldn't go to every day new dose for a week and then try the next drop if you still feel well. I certainly would have a week at every day the new dose before trying the next step.
It is something several of us have tried and it has worked for us. Each of us has a slightly different way of going about it but the concept is the same. Every reduction step is only a fraction of a mg and the body seems better able to adjust. Any time I feel a bit wobbly I stay where I am for few repeats, when I feel good I do the next one.
It isn't a regimen written in stone, everyone can experiment a bit because we are all different: different in the way we have PMR, different in the way we respond to pred and different in how we reduce our pred successfully. All that matters is managing to get to a lower dose of pred and, if we are very lucky, to zero. But I am also not fixated on that - if I have to stick at a low dose of pred for a long time, that's fine. That is the basis of the idea: we want to get to a lower dose of pred without suffering on the way. The lower we get the better - but it is the LOWEST DOSE that is important, not a ZERO DOSE.
Sambucca keeps reminding people of the tortoise and the hare - who won in the end? We are offering this concept to some of the rheumies as an option. We can't provide scientific evidence from double blind crossover studies, just what is called anecdotal evidence - what you tell us. So far the anecdotal evidence is looking quite good! I don't care as long as more people get to a lower dose of pred without having a flare!
Good luck and keep well.
Thank you so much. Will remember the tortoise and the hare. I do tend to be impatient!
Take care.
I think the main lesson for anyone with PMR (or treating PMR if it comes to that) is that we must be patient. If you rush at doing anything when you have PMR it will turn round and bite.
Learning to do things in bite-sized chunks, resting frequently and adequately between jobs and learning to know "That's enough for now" will make a massive difference to your life. It helps to be able to say "No, not at the moment..." as well. If you keep pushing at what you do you will just exhaust your muscles and it will take even longer to recover. If you just do so much, rest and do another session you won't get to the exhausted stage. It may sound counterintuitive to say "Rest in the afternoon if you need to" - but by planning a regular rest period in the afternoon (usually, but some people prefer late morning) you will be able to continue to function even in the evening and be able to go to bed at a "normal" time. It isn't just the muscles - it's your brain as well. No-one functions as well mentally when exhausted and in some cases you can become downright dangerous - driving, for example, or working with machinery. Or you say things you may regret later.
Google the "Spoons Theory" by Christine Miserandio to find a very apposite explanation of how we need to manage our resources when we have a chronic illness. It doesn't take long to learn how to juggle things best - after all we did it when our children were small, or when we first had to manage both ful time work and running a home. But you have to remember the lessons you learn, there is a definition of insanity: repeating the same action and expecting a different result!
It isn't "giving in" to your illness, it is "managing" it.
Thanks!
I have a fridge magnet - take my advice, I'm not using it - sums me up.
Your so right! But am learning, from experience usually! I work 15 hours a week, 10 -4, the standing joke at noon is - time for Ann's pre lunch break!
Have downloaded r
the 'spoons theory
Sorry that was a bit of a WHOOPS!
To continue! I'm doing well on the reduction plan so far. Love the "managing" attitude. We can be somewhat in control!
I saw an excellent physio last Thursday who addressed the 'person' and listened. He gave my excellent advice around my mobility.
My daughter had kidney cancer this time last year, and I did the race for life in June. Must add we walked!
This year she's doing well and we plan to have another bash at it this year. Last years team plus "Kathryn the Kidney Kancer Kicker", and my grandaughter. Together with my 73 year old friend who had a brain tumor removed.
We have back up in the form of "betty" kathryns now redundant pink wheelchair, in case I - or someone else - needs a lift!
But its open ended. See how things are on the day.
Thank you again, and to everyone who takes time to time here. Its so good to know there are others who know how this thing affects daily life.
Keep going folks. .
Best wishes, Ann
Consistency of predniselone? 🤔
Pain, stiffness then nothing
PMR symptoms after 2 months of zero prednisone
I have had GCA for some time now -reduced dosage of preds from 15mg to 12.5mg on Sunday as advised by GP now feel really rough -
Cutting Prednisilone in half
