Any Tips For Tapering Off Prednisone?

Posted by hopeinal @hopeinal, Aug 26 12:19pm

This is my third attempt to taper off of Prednisone or at least down to about 4 mg since my rheumatologist said that I wouldn't have all of these gruesome side effects at that dose and could stay on it for life if necessary. The thing is that as soon as I get down to 7 mg I start to flare. Today is my 3rd day on 7 mg and my shoulders and lower back are so stiff and painful it hurts to move.

I'm really discouraged. Have followed the taper schedule my rheumie gave me and stayed at each dose for 2 weeks before dropping down another mg. Any tips or advice on how to taper without having a flare would be much appreciated.

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@andirae

Did you cut pills? That would seem difficult to maintain accuracy.

Did you titrate between old and new each time some?

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Cutting 1mg tablets is reasonably accurate. On the odd occasion that one half crumbles or is obviously smaller, I toss them in the bin. Doesn't happen often.

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@andirae

Did you cut pills? That would seem difficult to maintain accuracy.

Did you titrate between old and new each time some?

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I used a pill cutter with no expectation of total accuracy, nor did that ever feel important (no noticeable physical difference day to day). The 5mg pills could be split into 8 parts, the smaller 1mg into 4 parts. The pill was placed in the V of the cutter. When dealing with segments, I did one at a time, adjusting each with something small like a metal toothpick until it seemed centered.

I only cut one pill of each type at a time, using up the pieces before cutting another. Toward the end there were six old pill containers with labels like 1/8-5mg and 1/2-1mg (blue ink for 5mg bits, red for 1mg bits, really didn't want to confuse them.) Between the cutting and the math, it was a bit fiddly, but worked for me.

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Goodness! Glad it worked for you but way too fiddly for me. Lol I'm tapering by 1 mg increments so don't need smaller doses plus the Prednisone has wreaked havoc with my vision, especially close. 🥴

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@noti

I am on a slower taper plan, and am currently tapering 1 mg every 30 days. When I got down to 8 mg last month it took me much longer to adjust to the new dose, especially since I try to do a little too much the second I feel better. However I felt better by the end of the month. I am stiff and sore 6 days into my taper to 7mg, but usually feel okay enough by the end of the day, especially after I've walked and moved around enough. Knowing that I have 30 days to adjust, and knowing that it's worked so far gives me confidence and helps me get through a few uncomfortable days or weeks. I'm certainly not thrilled about taking so long to get off prednisone, but I don't think trying to rush it would work in my case.
So my take on what you are going through, as others have said, is that you probably should try a slower taper.
I've been using acupuncture to help with side effects. I believe it's made a difference.

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That's my situation now at 7 mg. Most days I'm very stiff and painful in my shoulders when I wake up since going down to 7, but it usually subsides as the day wears on. Three more days then I drop down to 6 mg. Seriously considering staying at 7 a while longer because of how the PMR has reared its ugly head but so want to taper to 4 or hopefully zero.

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@johnbishop

You could also try a really slow taper plan to see if works.

Dead slow and nearly stop reduction plan (DSNS - Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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Thanks, John, I'll check it out.

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@hopeinal

Goodness! Glad it worked for you but way too fiddly for me. Lol I'm tapering by 1 mg increments so don't need smaller doses plus the Prednisone has wreaked havoc with my vision, especially close. 🥴

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I would decide what my prednisone dose would be for an entire week. I had a seven day pill organizer and laid all my medications out for the whole week. That was more work than I wanted to do.

I didn't have too many problems except for random pills left in my pill organizer at the end of the week. I thought I was organized as long as I didn't drop my pill organizer and spill all my medications. When I would drop my pill organizer, that created a big mess.

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@jlo2252

@tapamil65
Hello and welcome to the PMR group!
I agree that this forum is a wealth of information and support.
I think Dadcue’s response in regards to “steroid-sparing” medications sound like the solution to yours and my problems with prednisone tapering. Right now I’m stuck at 7.5 mg, My rheumatologist wants to start me on Actemra. Although it is approved for people with GCA, it is now being used on patients who are having difficulties getting off prednisone and it seems to help these people.
Has your doctor ever discussed going on any other medications to get you off the prednisone?
Wishing you good luck on your PMR journey!

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I did go on actemra for 6 months. It did bring my sed rate down to 0 but the cancer doc I was going to for MGUS had an issue with the actemra so I went off it

The Actemra did work for me though as far as the PMR. So you should really look at it as a possible aid to getting off the prednisone

I am working on the slow weaning off prednisone at reducing 1 Meg a month. After reading all of the comments I may change the reduction to 1/2 when I get to 5 meg.

I have tried reducing by 1 Meg every 2 weeks and always have had reoccurrence. I was even at zero and had a huge flare and had to go back to 20

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@hopeinal

That's my situation now at 7 mg. Most days I'm very stiff and painful in my shoulders when I wake up since going down to 7, but it usually subsides as the day wears on. Three more days then I drop down to 6 mg. Seriously considering staying at 7 a while longer because of how the PMR has reared its ugly head but so want to taper to 4 or hopefully zero.

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Can you do a week or more of dosing at 7/6.5/7/6.5 to do a smaller reduction than dropping straight to 6.5mg? It really isn't hard cutting the 1mg pills in half. If that works okay you could drop to 6.5mg every day for a bit. The advice to reduce by no more than 10% dose at a time under 10mg works for many. Other people alternate days of 7/6/7/6 to get an overall reduction to 6.5mg.

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@andirae

Adding new drugs is always a caution for me. One never truly knows the side effects and what it may do to the body long term. Don’t want more issues. But I may still have to do something other than prednisone. I haven’t entirely ruled it out.

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I am the same whenever a new medication is prescribed or suggested. I research it as much as possible and keep in mind how sensitive my stomach is to any medications. Some doctors don't mind a patient looking into medications, some do.

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