I know this is silly but asking anyway. I am down to 1/4 mg pred per day (has only taken me 7 years). How do I get 'off' pred? Do I drop a dose a week and then after four weeks drop two doses?
Thank you in advance for all your expertise, kindness, support and friendship.
Whitefish xx
Probably the best way , but if you’re really nervous you could follow my ultra slow taper -so repeating week ..so 14 weeks rather than 7.
healthunlocked.com/pmrgcauk...
But whatever way you decide to go , make sure on the first few tapers, the day without Pred aren’t consecutive… see attached if you’re not sure…
Thank you . Not nervous but really don't need more aches and pains. Thanks again. x
I admire you being able to cut a tiny 1 mg in four!....well done....
I've got a screenshot of your spreadsheet. Thx.
Brilliant! Depends how confident you are I suppose!!!
Completely incompetent I would say.
I think I would try zero for a day then go back on to pred for say a week. If OK I would do the same thing again, but only go back to my normal dose for six days and so on. You may prefer to wait less than a week initially of course.
Thanks. Super helpful. Slow and steady (wins the race).
Best of luck, looks like the finishing post may be in sight!
I’m currently on the dsns taper from 0.5 to zero. Only just started so early days yet. I did stay on 0.5 for 6 weeks before this, just to make sure I had no residual aches & pains ready for the final (final?? 🤞) taper. Good luck & hope you’re successful.
Hi, 123mossie, that's what I did. Been able to stay off the pred since 1st May. Keeping everything crossed I can continue. Good luck with your taper.
Deeply envious! Good luck! 🍀
Thanks. Fingers crossed.
Being optimistic for my future, how do you get 1/4Mg?
You just cut the 1 mg into half and half again. A bit uneven but it's fine.
Doesn't have to be accurate, just less ...
Well I suppose I do end up with "bits" a lot of the time when I try and cut 5mg in half. Perhaps I need to invest in a pill cutter rather than rely on my Stanley knife. 🤔
There are pill cutters and pill cutters! But some are brilliant.
It would seem that I am of the less than brilliant pill cutters.
I mean the devices!!! I have 2 in the house - identical in design but not in function. Mine is fine, I was never able to operate OH's successfully. He did fine with it!
That was my sad attempt at humour but it does raise the question of how will I know whether a pill cutter is brilliant or not before parting with my hard-earned?
Sorry - I hoped my reply was humourous too 
I know - as my problem illlustrated, design doesn't assure anything.
Not exactly expensive 🤣😂…probably less than the cost of a cup of coffee…. And safer than a knife….
I have one that has a razorblade and a “V” to center the pill. I’m very careful to get the score centered. After that cut I keep pressure on the cut tablet in the “V” and carefully rotate keeping it mated together 90 degrees and cut again for 1/4 pill. Usually get uniform cuts. Sometimes not but far away from being uniform that I can’t use them.
Same here. I’m using DL’s Simple Taper. Old Dose = 0.25mg, New Dose = 0. Of course at end of 4th week you are at zero (as week 5 = 7 days at new dose😂).
Since I’ve suffered no issues from at least 1mg downward I chose to begin with the wk 2 schedule as week one. So my last taper schedule looks like this:
Wk 1 - 0 pred on Sn, Tu, Th and 0.25 on M,W,F,Sa
Wk 2 - 0 pred on Sn, T, W, Th, and 0.25 on M,F,Sa
Wk 3 - 0 pred on Sn, T, W, Th, F, Sa
Done!
This assumes no recurrence of any PMR associated pain!
Fingers crossed….
Agreed, but raises other questions. How best to deal with and future PMR flares.
For example what’s the situation:
1) Let’s say when I’m at 0.15-0.35 mg/day that the cause of PMR is still present but very low. Low enough the Adrenals can manage most of it. Over time inflammation accrues to where I feel a tinge of pain. Considering Pred is 7x more potent than cortisol would just taking 1mg daily until pain subsides enough, or 1 mg every few days?
2) PMR really just goes in remission for unknown period of time. Pain returns, start over at 15mg and 10% reduction following your plan.
3) Or something in-between. It’s never in true remission, just waiting for the original trigger, whatever that is/was.
Really interested to see how my Rheumy addresses this as if all goes as plan I’ll have been off Pred for 1 week by the time of this rescheduled appt.
I want a game plan. Whether it’a a written prescription of 5mg tabs that I can fill within a year if symptoms return or a prescription I fill now. If PMR returns on a Friday evening through Sunday I take a pre-agreed dosage and notify his office Monday AM, otherwise, I call the office before taking.
Even though PMR usually goes into for most patients, it’s not guaranteed…. and it may reoccur in a matter of weeks or it may take a lot longer.
You just have to be aware, without being paranoid but don’t assume that every little ache and pain is it resurfacing -usually it’s not.
But if you do feel it is, then usually a return to 1mg or 2mg may well be good enough to get things back under control.
Unless the inflammation has been allowed to build up again without you realising, it’s unlikely you would need to restart from scratch again … but certainly not impossible.
Certainly discuss with your doctor, but I doubt he’ll tell you anything different other than to monitor things and contact him if it returns.
I don't think the adrenals are ever capable of managing the inflammation of active PMR - however minimal that activity may be. It really doesn't take much excess inflammation to eventually build up enough to cause symptoms - even if it does take months and months. The sooner it reappears, the less likely it was it went into full remission - which it does do for the vast majority sooner or later.
My Mum was a brittle asthmatic on Steroids for years at 60mg per day so she decided the time had come to reduce, she did extremely well. As she headed towards 1mg we came up with a plan that at first she went to every 36hours & then to 48hours before stopping completely - GP was more than happy with the plan….
I made an ultimately unsuccessful taper to zero and did it by using dead slow method with zero as the new dose, and also doing each step of the DSNS method twice, so taking three months instead of six weeks to taper from .5 mg to zero. In my case apparently I needed this vanishingly small dose, and hopefully this will not be the case for you. Good luck.
Would have been interesting to see if it would have taken you 9 wks instead of 12 wks if you had done 0.25mg steps 5 wks from 0.5 to 0.25 and 4 wks from 0.25 to zero.
I was not keen on trying to cut my tablets into quarters! In the end it didn't work anyway. Possibly I'd have been better off stopping at 1 mg for a while and not pressing on, but water under the bridge now!
Ask your g.p. for prednisolone soluble 5mg tablets;disperse one in 100ml of water so that 5ml equates to 0.25mg and 10ml equates to 0.5mg.
Very unlikely to happen most places - and not in the UK as it is such an expensive way of providing pred so they are told not to prescribe it
I'm pretty sure that prednisolone is not available in adult doses in Canada, at least not in the type of dosage used for PMR. My husband has prednisolone eye drops as he had a corneal transplant, and I think there are pediatric drops, and also prednisolone for veterinarian use. Thank you for your interest but I have never felt the need to taper by anything less than the .5 mg I can easily attain by cutting my 1 mg tablets. The people I feel for are those in countries where they can't get anything smaller than 5 mg!
It doesn't matter HOW slowly you go - if you need a tiny dose, you need a tiny dose ...
Yes, had a brain freeze. Shallower reduction rate may aid in adrenals coming back online or at least minimize magnitude of side effects but probably not significant at this low of Pred dose.
Sorry HeronNS.
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