My journey with PMR began in September 2021.Was on Prednisolone 20mg.
Have managed to taper successfully to 0.5mg since the 25th of June 2022.Bloods results in February and May 2022, inflammation markers ( ESR and CRP were good). No original symptoms of PMR and good energy levels.
When do I know when to stop taking prednisolone!
You don't really - except by trying it! If you can slowly taper that last 1/2mg and no symptoms reappear then you don't need it any more. But even 1/2mg can be enough to keep an ongoing tiny dribble of inflammation uder wraps.
Try it by using a slow taper and zero as new dose. If it works - hallelujah, you've won the jackpot. If it doesn't, at least you know the disease activity is VERY low and a tiny dose is enough. Be warned, it can take a few months for symptoms to reappear so keep a watchful eye out and be ready to pounce if you notice any increasing stiffness. Anything that doesn't get worse or improves is more likely to be your body readjusting to no pred and that is said to take up to a year.
Thanks for the reply. I guess I will have to try it( 0mg)but when, it’s a decision that I will have to make sooner or later.
You don’t know for sure -but many use a very slow taper to go from 0.5mg to zero.
You have to then just hope your disease is in remission -very often it is, sometimes it’s not. But you don’t know until you try.
But I would say don’t be in any great rush - you may find that 0.5ng is keeping everything under control whereas zero may well allow the inflammation to build up again.
To be completely off Pred in such a short time is unusual. Not impossible, but no point in rocking the boat unnecessarily.
I guess going to zero mg is a trial to see how the body reacts and hopefully no symptoms of PMR will resurface
I agree with both PMRpro and Dorset Lady, however I think I would be asking for a short cortisol test done at GPs at 9am in the morning and see what the result is.
I do know some men that had PMR and went into remission around 18 months to 2 years.
unluckily it did come back for a couple of them - so take care.
I did discuss with my GP about the synacthen test. In his professional opinion he felt, I didn’t need to do the synacthen test at the present time.
I plan to go to zero mg soon and will see the GP in August 22’ to discuss about basal cortisol test and get bloods done for ESR and CRP levels.
Doubt if you are functioning well re adrenals at 1/2mg it will be that much different at zero ...
I have decided to go zero mg from tomorrow (Sunday 10th of July2022).Its nearly a year ago since I first encountered my symptoms of PMR( which I was totally unaware of what is PMR ) following my 1st dose of Pfizer vaccine.Hopefully I can continue to do without the prednisolone for weeks, months and years!🙏🏼 And if all going well, I should then get the basal cortisol test done in a few months time.
Do you intend to drop from every day old dose to every day new dose overnight? I;d do it a bit more gently - it is a small dose but a big % change.
I have been on 0.5mg for the last 2weeks. The choice I have is either continue on 0.5 mg for? or give it a try on 0mg. So I decided to go to 0mg from tomorrow. I may be successful or I may begin encounter symptoms of PMR . Time will tell. Many thanks.
If it were me, I'd at least alternate 1/2 and zero before going to all zero.
I used my 7 week taper for the last drop -contained in this - healthunlocked.com/pmrgcauk...
Worked for me ..just saying.
Many Thanks for the information
I think what I would do is go zero for a day then go back to 0.5mg for a few days and then slowly reduce to zero by alternating the zero days and pred days until it is zero all the time, hurray!
Many thanks Piglette and PMRpro for the helpful advice on alternate days between 0.5mg and 0mg.I will follow the advice and as such will continue the alternate regime for another 2weeks. I have been using the Dosette box and should be easy to follow the regime and I shall organise that straight away. Once again many thanks for the great idea.Best wishes
I think both of us would counsel starting with one day of zero in a week, then 2 days but not one after the other - i.e. one or other of the slowed tapers you will find in FAQs so you introduce the zero days really slowly. Just so it is less of a shock to the system
I now get it, in a week only once to be on 0mgThen 2nd week twice on 0mg and so on till 0mg in all the days
👍..but don’t have the zero days consecutively in first few weeks …obviously by week 4 that becomes inevitable …
Many Thanks for the helpful thoughts and ideas of tapering the prednisolone to the endI would like to come off the prednisolone by end of July 2022.
Therefore my tailor made regimen to the end looks like this:
Day 1 10/07/22 Sunday 0 mg
Day 2-4( Monday to Wednesday) 0.5mg
Day 5 (Thursday ) 0mg
Day 6-8( Friday-Sun ) 0.5mg
Day 9(Monday ) 0mg
Day 10-12( Tuesday to Thursday) 0.5mg
Day 13(Friday) 0mg
Day 14–16( Saturday to Monday) 0.5mg
Day 17 ( Tuesday) 0mg
Day 18-21( Wednesday to Friday) 0.5mg
Day 22( Saturday 30/07/22) 0mg and hopefully that’s the end.
In total over the next 3 weeks I will be on 0mg on 5 different days.
I think I would probably go day 1 zero then day 2-6-0.5mg, day 7 zero, day 8-11-0.5mg, day 12 zero, day 13-14-0.5mg, day 15 zero, day 16-0.5mg then zerooooo. You could go day 2-8 on 0.5mg if you preferred and make it a slightly longer reduction time. Just see how you feel.
Many Thanks for the helpful thoughts and ideas of tapering the prednisolone to the endI would like to come off the prednisolone by end of July 2022.
Therefore my tailor made regimen to the end looks like this:
Day 1 10/07/22 Sunday 0 mg
Day 2-4( Monday to Wednesday) 0.5mg
Day 5 (Thursday ) 0mg
Day 6-8( Friday-Sun ) 0.5mg
Day 9(Monday ) 0mg
Day 10-12( Tuesday to Thursday) 0.5mg
Day 13(Friday) 0mg
Day 14–16( Saturday to Monday) 0.5mg
Day 17 ( Tuesday) 0mg
Day 18-21( Wednesday to Friday) 0.5mg
Day 22( Saturday 30/07/22) 0mg and hopefully that’s the end.
In total over the next 3 weeks I will be on 0mg on 5 different days.
Wow 10 months down to 0mg is incredibly quick. Do you have any pain or discomfort?
Hi Liby57.Never had any original symptoms of PMR since reducing prednisolone from September 2021. Along the way, I have had bloods done to make sure my ESR and CRP were within the normal range prior to any decrease of prednisolone medication.
I am not totally on 0mg . Have been on 0.5mg for the last 14 days. Now its a different regime alternate days of 0.5mg and 0mg.
Today Sunday ( on 0mg). Then next 3days 0.5mg followed by 0mg, followed by next 3days on 0.5mg. Hopefully by end of July 2022 be on No prednisolone. That’s the plan if I am successful.
Hi…I got to 0 after 11 months. Felt that I wanted to be done with Prednisone…my Rheumatologist at Marshfield Clinic in Wisconsin guided me. At first I may have felt a twinge or two but I took aspirin, etc. I never had a real flare. Since then I have stopped all prescription drugs ( will take antibiotics for infections)…. Feeling OK, still s walk funny but no real pain.
That’s great to hear the good news.I plan that by end of July 2022, I will stop my prednisolone and hopefully I don’t encounter any symptoms of PMR
Just read your bio…..I believe my PMR resulted from a Senior Dose of flu vaccine. Therefore I did not agree to receive the Covid Vaccine. I see you had symptoms shortly after you took the CV……I think some of us are sensitive to vaccination. I will never take another vaccine…..ever.
The Rheumatologist’s did acknowledged that in view of my symptoms of PMR after receiving the Pfizer vaccine , the vaccine could have interfered with my immune system. I have never taken a flu vaccine. The last I took antibiotics was about 25years ago.I had Pfizer vaccine in July/ August 2021, and that was the end of me getting any more vaccines.I will take my chances with covid, like everything else in life.
Thanks for the interesting post. I have been following the slow tapering plan suggested by the good people providing excellent thoughts here, and I too have progressed well but not as quickly as you. I am at .5 mg/day, and started my new dose. Not zero, but with a pill splitter, I can make a reasonable stab at 0.25 g/day. So, I have started introducing that lower dose. If and when that seems to work, I will introduce 0/day, but very slowly and avoiding consecutive days, as you were advised.
Do other members of the forum feel it is unnecessary to include 0.25 g/day as the penultimate dose? As observed, going from 0.5 to 0 is a big jump in percent terms -- but perhaps the absolute dose is so small it is safe enough.
Good luck with the last lap!
Some feel the need to go to 0.25mg rather than from 0.5mg to zero -it’s really an individual choice. Others may just make a it a slower tapering regime, or not. Horses for courses..
Think it depends on you. In theory if the PMR is in burnt out and in remission you should be able to just stop at this level - but a lot of us feel caution is never misplaced both since even 1/2mg can be the difference between the inflammation building again and not.
Thanks, PMPro! Your advice makes sense as always, and I will stay the course with the slow taper (and continue to practice my pill-splitting skills...)
Not a easy task to split 0.5 mg tablet into half(0.25mg).I guess people like us in the health forum who are on the so call last lap are caution about stopping the prednisolone. Anxiety is ,will PMR resurface? and its a decision we have to make sooner or later. Best wishes to you Marinescience and hope all works out well.
Agreed, the 1mg pills sold here in Canada tend to crumble if you try to cut them into quarters. But if my goal is to get a dose of 0.25 mg or less, then I am not too far off. Thanks for the good wishes, and the same back to you!
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