Methods of tapering

[arvine]

I have posted my history , in particular from Dec 2022 at which time, rheumy incr dose of pred from 4 mgs, to 40 due to suspected GCA, which it was not after tests were done, so then was to decrease fairly quickly to get back to where I was prior to Dec 2022, my question is, for last over 6 yrs have used the dead slow tapering method, but in this case, wondering if I could taper a little faster with a different method, just started to taper from 10 mgs t0 9 using the dsm, but will take so very long again, have seen some other methods, ie every other day new dose etc, not sure how that goes though, so if anyone out there has had similar experience, and want/needed to get to lower dose quickly, (as other issues are looming, ie back problems, subacute stroke treatment), would like to hear from you, thank you

[SheffieldJane]

How are you in terms of PMR and or GCA symptoms?

How was GCA discounted?

I would still be wary of a fast taper. Your Adrenals switch off after 2-3 weeks on Pred. I think we need a bit more information for a useful reply.

[arvine in reply to SheffieldJane]

Well, really don,t have much in way of PMR symptons, if any, markers on last blood test were fine, had a temporal ultrasound done to discount GCA, then an Mri, showed subacute stroke, but the symptons I had in early Dec, tender scalp, tender temples, and slight jaw discomfort, disappated very quickly in Dec, and no real noticeable symptons that would have accounted for subacute stroke?, a mystery, then had catscan done on neck , check or any blockages, nothing showed up, soooooo, and have been on pred since Oct 2016, and was down to 4 mgs, by NOv 2022, for a number of months, big issue right now , is the debilitating lower back pain, caused by spinal stenosis, bulging disc, osteo etc, so i can,t take any meds to relieve that, tylenol doesn,t really help, getting off pred, may allow some other treatment for back pain

[SheffieldJane in reply to arvine]

Ah! I see your motivation. A slow taper obviously supports your adrenal function recovery. Rushing it will increase unpleasant symptoms. I wonder if Endocrinologist input could help here? Would hydrocortisone be more compatible with alternative drugs for your spinal stenosis?

[arvine in reply to SheffieldJane]

well I don,t know about hydrocortisone, but have a referral to pain clinic, waiting for appt for consultation, my endocrinologist on maternity leave, and so far haven,t had appt for mos now with replacement, so many appts, and takes so long to get appts with specialists of course

[PMRpro Ambassador]

Using DSNS still results in a drop of 1mg per month as is recommended by endocrinologists for below 10mg. It just feels less uncomfortable. You could try doing 2.5mg and a DSNS taper down to 7.5mg, possibly even to 5mg, But below 5mg you have to slow down just to allow adrenal function a chance to return.

[arvine in reply to PMRpro]

Im not sure I understand, maybe Ive been doing the dead slow taper different, taking longer than month to get to new dose everyday, I do first day new dose, next 6 days old dose, then 2 days new dose, next 5 days old dose, then 3 days new dose, next 4 days old dose, unless Im doin something wrong ?, takes around 7 weeks to get to new dose each day, so if Im doing that method wrong, please let me know, and if I was to do the 2.5 mg drop, how would I do that ?

[PMRpro Ambassador in reply to arvine]

No, not wrong but the basic DSNS is 4 days at the start and finishes in a month. Though you seem to be doing it a different way to waht was envisaged which is 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. And then you build up in reverse: 2 days new dose, 1 day old dose, 3 days 1 day old dose and by then you you can probably go with every day new dose.

The 2.5mg drop is exactly the same but the new dose isn't 1mg less but 2,5mg less.

[arvine in reply to PMRpro]

so sorry PMrpro, I am having a hard time understanding the taper method, that will get me down to 9mgs in a month, fog brain senior moments, I don,t know, guess what i was doing was calculating for 7 days in a week, can you refer me to a site where I can see plainly the actual DSNS tapering schedule, I am apprehensive to drop the 2.5 mgs so far, did have a little trouble on way down to lower doses , when I was dropping 5 mgs, from 20 mgs, but would like to get down to lower doses month by month,

[DorsetLady PMRGCAuk volunteer in reply to arvine]

PMRpro original post-suggest you print off relevant info -

healthunlocked.com/pmrgcauk...

[arvine in reply to DorsetLady]

Thank you, but one day new dose, 6 days old dose, fine, but 1 day new dose, 5 days old dose?? one day new dose 4 days old dose ??7 days in week, ? Sorry, I am just not getting it,

[DorsetLady PMRGCAuk volunteer in reply to arvine]

Just forget about weeks -and think in terms of days …

[arvine in reply to DorsetLady]

ok, so is this right, sorry to be such a pain, but if you take one day new dose, 6 days old dose, that makes sense, but then again it says, one day? new dose 5 days old dose, that,s only 6 days, what happens to the 7th day, ? and one day new dose, 4 days old dose, what happens on the other 2 days in the week, that,s what is confusing me, ?

[PMRpro Ambassador in reply to arvine]

DL just said - don't think in weeks. It was originally arranged to work over a month - take a calendar and on the 1st mark it as 1 day new dose, then mark 6 days as old dose. Next day, one day new dose, followed by 5 days of old dose. ANother single day of new dose, Then 4 days old dose. And so on. Nothing to do with weeks at all.

[Zebedee44 in reply to arvine]

I understand your confusion, I couldn’t get my head round it either until I stopped thinking in weeks of 7days.

[PMRpro Ambassador in reply to arvine]

You are challenging your body with the new dose one day at a time and then letting it recover on the dose it is used to. The days of the new dose get closer together each time until you get to every day new dose. Nothing to do with weeks, if you want weeks, use DL's taper which is based on weeks.

[SallyLeon]

I've been off prednisone for about a year, and thankfully PMR hasn't reared its ugly head again. When I was tapering below 5mg, the only thing that worked for me was to reduce by 1/4 mg per week. My rheumatologist wanted me to drop by 1mg at a time, but even .5mg didn't work for me with my adrenals, and feeling so fatigued. 1/4mg per week still got me reducing 1mg per month, but my body seemed able to handle the gradual taper per week better. I wish you luck, and keep at it because there will be a tapering plan that works for you.