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Successful (so far) approach to a super slow taper
I have suffered from PMR since 2019, first starting treatment in February 2020 at 20 mg of prednisone, which was immediately effective, and I subsequently struggled with the taper for five and a half years, getting down to 1 mg, or half a mg, then going cold turkey, only to have the pain return within a week. In June 2023, on my rheumatologist’s recommendation I relaxed about it, went back up to five mg. and started what I hoped was a final taper. I did the usual slow drop, half a mg at a time through August of 2024, coasting for long periods of time at 2 mg. In September of 2024, after reading about the effectiveness for people of a super slow taper, I decided to do that, but approach it a bit differently. Instead of looking at a consistent drop on a daily basis (down .25 or .5 mg per day), I came up with a plan that looked at my weekly dose, and then did a consistent percentage drop in the total weekly dose over time. I reasoned that doing a normal taper, where you are taking the same dose every day, the .25 or .5 daily reduction becomes a larger and larger percentage drop in the total dose over a week, making it too fast.
When I started the taper, from 2 mg a day in September 2024, or 14 mg a week, my first drop was to 13 mg a week: 1.75 mg, three days a week, and 2 mg 4 days a week. That represented a 1 mg drop over the week, or 7%. I held that dose for six weeks.
I continued that way, spreading out an approximate 8-15% drop per week over the week (example, second taper after six weeks was to 12 mg total (6 days at 1.75 and one at 2 mg), an 8% drop in the weekly dosage. My final taper was in mid-July of this year, where I was down to 4.5 mg a week (4 days at .75, and 3 at .5 mg). In late July I had cataract surgery, and after a week realized that I was doing the steroid eye drops at the rate of 3 mg of prednisone a day! Since I felt relatively pain free, I decided to stop the oral prednisone completely, and I never picked it back up.
I am two months post taper and, knock on wood, I am in remission. I will never say never because this condition is really a bear, but I think that there is really something to a taper that is SUPER slow, with consistent percentage drop in the weekly total dose.
This approach means you have to have a good pill splitter and not mind using it. I never went smaller than .25 mg, which is pretty tiny with the 1 mg pills, but it seems to work. I have attached what I came up with in an excel spreadsheet. I hope it helps someone out there!
Ann Metcalfe
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Hello Ann.
Thanks for sharing your journey. I'm finally at 1mg. Been there for almost 2 months and can now notice my body adjusting. 2 Years and 7 months now since the start of PMR. Had one flare-up in the first year because I was tapering too quickly. Since getting down to 5mg, I've been tapering by .5mg every two months. Tapering has gradually become more difficult. I don't experience what I would describe as the classic PMR pain at this time but the discomfort of Prednisone withdrawal really impacts the quality of my everyday life. My plan now is to stay at
1mg for at least 3 months. Whenever I've equilibrated at a particular dose (5mg or below) I notice a more comfortable "normal" for a while until I taper my dose again. For me a SUPER SLOW taper is absolutely necessary to adhere to.
Best wishes
Ernie
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7 ReactionsThanks, Ernie. Good luck on your journey with it. Sounds like you are taking the same path I did. The hardest thing for me was to avoid getting anxious about it, because I really wanted to get off the medication. And who knows, I might relapse. But for now I seem OK. My rheumatologist kept telling me that 3 mg or less was basically nothing in the scheme of things, but I didn't find that to be true for me!
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4 ReactionsAnn, i'm not sure how to access your spreadsheet. I see no link to it in your message. I'm interested in learning more about your approach. I'm down to 4.5 mg a day with good results, but I'm not sure where to gofrom here.
Thanks,
Zane Quible
Hi, sorry about that. Ooops, I see now it doesn't take Excel files. I've converted it to a csv and attached that.
Ann
2024-25 smoothing schedule PMR taper (2024-25-smoothing-schedule-PMR-taper.csv)
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2 Reactions@amak23
Ann, thanks. I'm at 4.5 mg a day with no pain. I tried a mix of 4.5 and 4 a few weeks ago, and eventually the pain returned. I think the 4.5 down to 4 was too big a drop. I'll try again using your approach in terms of number of days at each level and the .25 drop in amount of reduction in prednisone. I've been taking prednisone since early February.
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1 ReactionI have GCA, started at 60mg prednisone in January 2025, and now tapered to 5mg. I understand the need for a very slow taper at this point. Can anyone comment on how, or if, the rate of taper is affected by monthly Actemra infusions? My rheum doc says at this point one month each at 5 mg through 1. But I am concerned thus may be too fast?
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1 Reaction@amak23
Hi Ann. Thank you for your comments. I saw my doctor last week @ 75 days on 1mg. I was definitely pleased with my labs and BP. Had to mention that in the last couple of days I was developing pain in my shoulders well after feeling like I had adjusted to the 1mg. I was hoping it would subside. He said pretty much, very similar what your rheumatologist said about the 3mg. He also said if I have to go as high as 5mg to be non refractory that was fine but to call him if 5 isn't working. I've been at 2mg for a couple of days. Better, but not entirely pain free. Since PMR started, I routinely break a 650 Tylenol in half each day. Pain levels came down from 5 to 3. My next step is to try the 2.5 mg tablets that are still good and see if they help the rest of the way. I can relate to the potential anxiety/depression issues. So frustrating to have my serotonin levels ambushed. Another undesirable loss of control. The journey continues. My doc did mention a study that took into consideration a percentage of patients that are unable to come off of Prednisone entirely. My goal now is to hopefully land on the lowest effective dose for me.
Best Wishes
Ernie
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