Currently I'm taking, on alternate days, 1/2mg & 1/4mg of pred., (I got here using the ultra slow method and my CRT/ESR levels have ben stable throughout). My first query is when I drop to 1/4mg do you reckon I just reduce 1/4 to 0mg or should I actually look to go from 1/2 to 0mg? (When I cut the tabs up they are not by any means a precise 1/4mg.
I've managed to get through PMR without really awful effects but I am aware of the effect psychologically (taking Citalopram) and the strange aches and pains that move around my body and the fatigue. The fatigue has been particularly noticeable in the last 3 months.
Regarding these symptoms, toward the end of withdrawing from and the cessation of Pred., is there any resource or info., about what to expect and how to cope with recovering from long term use of the steroid. I understand that the body's return to 'normal' can take a while
I currently avoid sugar (except in beer) try to be as low carb as poss., I exercise regularly to a decent level (much walking and 2-3 workouts at gym a week).
I realise that those who eventually escape the grip of PMR/pred., may not read these forums much but insight would be helpful if you have come out the other side. Thanks in advance.
Written by
CornishCliff
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Haven't got there myself (into fifth year post-diagnosis, 1.5 tapering to 1) but when I started my doctor told me that she had patients who kept a supply of 1 mg tablets on hand for a long time just in case they needed a dose from time to time. As time has gone by I've come to recognize this as a continuation of any slow taper plan. I believe the idea is that eventually one doesn't need that occasional 1 (or .5 or .25 mg) dose any more. So what I'm expecting, and perhaps even hoping for, is once I take that "last dose", whatever it is, I will still feel okay to take a little dose maybe the following week if I need it, and so on, until eventually I can take the remaining tablets to the pharmacy for safe disposal.
You could ask for a Synacthen Test, this will show you if your adrenals glands are full functional. They must be working as you are so low............however belts and braces.
However, a younger man who posts on here, and he was around your age, just stopped and waited to see what happened. He had a supply of 5mg, 2.5mg and 1mg just in case.
It worked but he still carries his card.
If you do decide to stop, please take it easy, you are not back to your old self.
Remember when you do stop, then carry your blue steroid warning card for up to two years.
However, it is a personal decision, you know your own body best.
Everyone I know who has got over PMR and off pred (and there are several) just set off into life! There isn't a lot of difference between being on 1/2mg pred and none provided the PMR is gone. They do say they felt it took a year or so to feel really back to "normal", though after 5 years or so, your normal will have changed too simply because of age.
On a diabetes forum that I joined, I learned the acronym YMMBD (your miles may be different) - which meant that what worked for one person may not work for another person. I think it applies here too, I don't even have PMR (and thanks to the experts here:- they pointed me in the right direction) but do use steroids and come in here to ask for advice about all tapering info on steroids - and also, it makes me feel that I am not alone anymore as I don't know anybody else in RL who has it.
In fact, my pred ravaged memory has just told me that the acronym was actually YMMV (your miles may vary) instead of the YMMBD
I’ve been off pred for a few months and my PMR seems to be ok. I reduced very slowly from 1/2 to 1/4 to zero.....really paying attention to how I was feeling.
I wish I had exercised more as I find my muscles are weak, but I had fatigue issues the whole time and even now I haven’t snapped back to normal energy. I sure hope I will have more energy eventually!
I got through my last taper as below - old dose being 0.5mg, new dose zero.
SLIGHTLY LONGER TAPER (7 weeks)
Week 1 -
Sun - new dose
Mon-Sat old dose
Week 2 -
Sun, Thurs new dose -
Mon, Tues, Wed, Fri, Sat old dose
Week 3-
Sun, Tues, Thurs new dose -
Mon, Wed, Fri, Sat old dose
Week 4 -
Sun, Tues, Wed, Thurs new dose -
Mon, Fri, Sat old dose
Week 5 -
Sun, Tues, Wed, Thurs, Fri new dose
Mon, Sat old dose
Week 6 -
Sun -Fri inclusive new dose
Week 7 -
Every day new dose
Worked okay for me. I does take some time for “the system” to get back to functioning normally - and as said the usual aches and pains of age do come back to remind you of such, so don’t imagine that every twinge is a reoccurrence of PMR, although it is sensible to keep some tablets at hand just in case they do.
In your case, the main thing I would be concerned about is the fatigue you mention, that should be easing off if your adrenals are functioning which they obviously......but maybe not as well as they could be. So they might need checking. Other than that - onward and upward as they say.....and good luck.
Please keep in touch, as you say too many patients in remission don’t - and that’s a shame, their experience is needed for newbies.
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