Lowering Prednisolone Doses: Has anyone experienced... - PMRGCAuk

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Lowering Prednisolone Doses

Birdboxinthegarden profile image

Has anyone experienced insomnia as soon as they reduce their dosage. My GP suggested lowering the dose ie take 7 and then on alternate days 6 and then the same after a week to ten days. When I switched to adjust to the lower dose for the first few nights I have no sleep. Any advice appreciated, thank you.

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Birdboxinthegarden
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15 Replies
PMRpro profile image
PMRproAmbassador

That is quite a dose change at low doses - what about trying something a bit slower?

healthunlocked.com/pmrgcauk...

Other options are available. But all of them work on a similar principle, allowing the body to adjust to the new dose much more slowly.

Birdboxinthegarden profile image
Birdboxinthegarden in reply toPMRpro

Thank you for your reply. When you say a bit slower would appreciate how you think I should proceed please.

PMRpro profile image
PMRproAmbassador in reply toBirdboxinthegarden

Look at the link I supplied - it is working again now.

SnazzyD profile image
SnazzyD

Yes, mostly at doses higher but at 7mg I dropped by 0.5mg over 6-8 weeks.

HeronNS profile image
HeronNS

I found alternating doses simply confused my body. Slow introduction of the new dose over four to six weeks was much more easily tolerated. Also, are you expected to drop to 6/5 after only a couple of weeks? Reduction should be no more than 10% at a time, and that's why we use the very slow methods once we are below 10 mg.

I turned out to be very sensitive to prednisone reduction. Others who have this problem may benefit from this experience: starting at about 7 mg I actually tweaked the dead slow method by dropping by .5 mg at the beginning of the taper, then a further .5 mg in the middle, so I did achieve a 1 mg reduction in a month but never actually dropped by more than .5 from one day to the next. As my dose got quite small, I forget exactly where (maybe 4 mg or so?) I dropped by only .5 for the entire month/six weeks. "It isn't slow if it works". Better to take extra time to taper with least discomfort and reduce chances of a flare. You'll have a lower total intake of pred in the end.

Pamk1949 profile image
Pamk1949 in reply toHeronNS

Hello Heron. Did you do the same .5 reduction when you got below 2-3 mg?

HeronNS profile image
HeronNS in reply toPamk1949

I did. At that low dose I did the long version of the dead slow method so each half mg taper took six weeks. I also have to say that I was not able to taper successfully for a couple of years once I was on 2 mg. I would try occasionally but apparently PMR was still simmering away and I would give up, sometimes partway through the second half of the the taper. Last year, around mid June, I tried something different, which was to actually repeat each step of the dead slow taper. So, starting like this: one day new dose (1.5) six days old dose (2), one day new dose, six days old dose, one day new dose, five days old dose, one day new dose, five days old dose and so on, for three months to end of the taper, then continued with the next .5 mg taper. It took a year to get from 2 to zero, with zero being my new dose for the final three months, but I've done it and been at zero pred for a few weeks, fingers crossed it will be okay, so far so good. Was on pred for almost to the day 5 years, and must have had PMR undiagnosed for well over a year previously.

Pamk1949 profile image
Pamk1949 in reply toHeronNS

Great advice...thanks!!!

TheMoaningViolet profile image
TheMoaningViolet in reply toHeronNS

Hi HeronNS, I find your method very interesting. Would you mind explaining how you dropped twice by 0.5mg during the same taper?

HeronNS profile image
HeronNS in reply toTheMoaningViolet

Not sure exactly which idiosyncratic method you are referring to. If it was my three month tapers I don't really know how I can explain it more clearly than I did in my reply to Pamk1949. I used the dead slow nearly stop taper plan. You need to understand that plan first. " healthunlocked.com/pmrgcauk... ... :

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

"

What I did was repeat every line of that plan.

However, if it was my dropping by a full mg during the course of a normal use of DSNS, but only in .5 mg decrements, if you look at the middle there's a point where you have one day new dose, one day old dose, then one day old dose two days new dose. In the version of DSNS I first saw and always used (and would actually recommend) it was one day old dose one day new dose and that's where I would make my current new dose become my old dose and would drop a second half mg to make a "new" new dose. Thus: one day new dose (5.5 mg) one day old dose (6 mg), one day "new" old dose (5.5 mg) one day "new" new dose (5 mg). This I only did when at higher single digit doses. Probably by 5 mg I was only doing .5 mg for the entire taper. That's something everyone would decide for themselves, whether they were ready to taper a full mg in the month,

TheMoaningViolet profile image
TheMoaningViolet in reply toHeronNS

Thank you for explaining it so clearly.

HeronNS profile image
HeronNS in reply toTheMoaningViolet

I hope it's right. As I explained in a private message a line seems to have disappeared from the published version of DSNS which I had always used, so it took me a while to figure out why I couldn't seem to get the explanation right, and kept editing the reply. The line which is no longer there is: one day old dose ONE day new dose and as that's where I made my change it did confuse me today!

TheMoaningViolet profile image
TheMoaningViolet in reply toHeronNS

Thank you, got it.

Thelmarina profile image
Thelmarina in reply toHeronNS

That’s so helpful, thanks. I wondered about the middle bit too! I have tapered at .5mg from 10.mg downwards, now at 7.5 increasing more intensive exercise very slowly to strengthen muscle tone, with no ill effect so far. I’m three years down the line and fortunately my rheumi lets me do it my way. I can imagine wanting to gallop past the goal post but like the luxury of taking my time 😀👍🌺

MrsNails profile image
MrsNails

As SnazzyD & HeronNS say think about dropping by 0.5mg it has less of an impact on the body & hopefully you won’t notice it as much.

Anything more than a 10% drop is making it so much harder.

I’m on 12mg (again) but my next drop will be to 11.5mg a case of the Tortoise & the Hare!

Good Luck 🍀

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