I’ve been on a prednisone taper for almost one year, down to 1 mg.

Posted by yogijan @yogijan, Oct 22 9:03am

Diagnosed with PMR, 11/2025. I’ve been slow taper on prednisone with success, on 1 mg for two more weeks, until 6 days ago. Severe flare, elevated CRP, ESR, pain and exhaustion. So discouraged. My rheumatologist discussed starting kevzara while increasing prednisone to 5 mg.
Has anyone had similar experience and did you start the biological or try taper again. I’m very disappointed and discouraged.

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I went with Kevzara…..good choice. Off prednisone

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At a low dose of 5mg/day, I’d consider just Prednisone alone.
Here’s why.
You may have tapered too fast or just had a bad luck flare or experienced adrenal failure. What did doctor(s) say?
But that aside. Kevzara will take 3 months to get to a maintenance level. Tapering from 5mg/ day down to zero at 0.5mg decreases every two weeks, puts you at zero Prednisone in the same amount of time.
Kevzara can lower white blood cells, absolute neutrophils and platelet count. We are entering the cold and flu season.
If you are not experiencing severe Prednisone side effects. You might can taper off before Kevzara would reach a maintenance level.
Message or visit with you doctor about time frames. You sound like you’ve done well without a steroid sparing med. Until the flare. Me, I’d try to taper to zero over the next 3 months without Kevzara.
I took Kevzara until it put my wbc counts in the basement. I quit Kevzara before I quit Prednisone. I went from 2mg/day to zero in 4 weeks after stopping the Kevzara.
Everybody is different.
Best wishes.

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Profile picture for stonewheel @stonewheel

At a low dose of 5mg/day, I’d consider just Prednisone alone.
Here’s why.
You may have tapered too fast or just had a bad luck flare or experienced adrenal failure. What did doctor(s) say?
But that aside. Kevzara will take 3 months to get to a maintenance level. Tapering from 5mg/ day down to zero at 0.5mg decreases every two weeks, puts you at zero Prednisone in the same amount of time.
Kevzara can lower white blood cells, absolute neutrophils and platelet count. We are entering the cold and flu season.
If you are not experiencing severe Prednisone side effects. You might can taper off before Kevzara would reach a maintenance level.
Message or visit with you doctor about time frames. You sound like you’ve done well without a steroid sparing med. Until the flare. Me, I’d try to taper to zero over the next 3 months without Kevzara.
I took Kevzara until it put my wbc counts in the basement. I quit Kevzara before I quit Prednisone. I went from 2mg/day to zero in 4 weeks after stopping the Kevzara.
Everybody is different.
Best wishes.

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@stonewheel
I agree! I had to taper off prednisone because of SMM, so I went with kevzara. 5mg prednisone is mostly an insignificant dose according to both my rheumatologist and my hematologist-oncologist. I could have stayed there longer, but I'm more concerned with SMM developing into MM and I don't want even a low dose of prednisone masking the progression of SMM no matter how small that risk. I'm off prednisone for three weeks and have been on kevzara for 13 weeks now and I'm not getting the relief I expected.

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I did just that. I'd tapered to zero but was in extreme pain. Tried Methotrexate and it did nothing. Went back to 5mg of Prednisone (with one or two Tylenol arthritis tabs depending on activities and pain level) and started Kevzara. It is said to take three months to be effective. I have had three shots - six weeks - and am down to 2.5mg Pred. Pain was somewhat less at first, probably from the 5mg of steroids, but unexpectedly improved dramatically a week ago. Still some stiffness and minor pain, but I'll take it! I have no idea whether this is due to Kevzara or a natural remission. I am 78 and otherwise healthy and have been on the PMR journey for 18 months.

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Tapering can be a difficult challenge. I speak from experience of attempting to taper then suddenly crash! I find myself with a flare up which then requires me to increase my steroid medication to deal with it so I feel for you when you face feelings of discouragement and frustration. I have days when I want to cry because the PMR has completely stuffed my quality of life and mourn what once was and is now a memory.
This last week I have had to spend most of my time resting as the fatigue and weakness has kicked in. Up until a week ago I was dealing with a flare up and increased my steroids (as per the written plan from my GP) to 12mg. As from the beginning of this week just passed have decreased down from 12mg to 11.5mg and that was when the fatigue kicked in. You are not alone in feeling discouraged when things don't go right. Greetings from Dunedin, New Zealand. Carol.

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Profile picture for stonewheel @stonewheel

At a low dose of 5mg/day, I’d consider just Prednisone alone.
Here’s why.
You may have tapered too fast or just had a bad luck flare or experienced adrenal failure. What did doctor(s) say?
But that aside. Kevzara will take 3 months to get to a maintenance level. Tapering from 5mg/ day down to zero at 0.5mg decreases every two weeks, puts you at zero Prednisone in the same amount of time.
Kevzara can lower white blood cells, absolute neutrophils and platelet count. We are entering the cold and flu season.
If you are not experiencing severe Prednisone side effects. You might can taper off before Kevzara would reach a maintenance level.
Message or visit with you doctor about time frames. You sound like you’ve done well without a steroid sparing med. Until the flare. Me, I’d try to taper to zero over the next 3 months without Kevzara.
I took Kevzara until it put my wbc counts in the basement. I quit Kevzara before I quit Prednisone. I went from 2mg/day to zero in 4 weeks after stopping the Kevzara.
Everybody is different.
Best wishes.

Jump to this post

@stonewheel @yogijan Yes, I agree with stonewheel as well. 12 months for PMR with a taper down to 1 mg is actually quite a fast taper. But you did get close to zero and that is a very good sign that your underlying PMR inflammation has calmed down a lot, but it looks like it hasn't gone away entirely.

Additionally you have the challenge of adrenal insufficiency at those low levels. 12 months is a relatively short time for PMR to have come and gone, but it is more than enough time for the prednisolone to have whacked your adrenal gland's production of the body's natural cortisol right on the head. Those adrenal glands need to get back to working again as you taper the pred, and usually can only do so if the taper is very slow below 5 mg. Some of what you have experienced may be from this process not kicking in as fast you you need it too.

Even though it must feel disappointing to get so close and have issues, what you has happened to date is really very positive. As others have said adding in another medication may not do much good when the pred has already been working well. Going back to 5 mg until your issues settle is likely a very good idea, then to start tapering again slowly again until you get back to the last spot where you felt really good (2 mg, 3 mg?). It might also be a good idea to ask the doctor for a cortisol test which will give an indication of how well your adrenal glands are coming back on line. Good luck.

REPLY
Profile picture for stonewheel @stonewheel

At a low dose of 5mg/day, I’d consider just Prednisone alone.
Here’s why.
You may have tapered too fast or just had a bad luck flare or experienced adrenal failure. What did doctor(s) say?
But that aside. Kevzara will take 3 months to get to a maintenance level. Tapering from 5mg/ day down to zero at 0.5mg decreases every two weeks, puts you at zero Prednisone in the same amount of time.
Kevzara can lower white blood cells, absolute neutrophils and platelet count. We are entering the cold and flu season.
If you are not experiencing severe Prednisone side effects. You might can taper off before Kevzara would reach a maintenance level.
Message or visit with you doctor about time frames. You sound like you’ve done well without a steroid sparing med. Until the flare. Me, I’d try to taper to zero over the next 3 months without Kevzara.
I took Kevzara until it put my wbc counts in the basement. I quit Kevzara before I quit Prednisone. I went from 2mg/day to zero in 4 weeks after stopping the Kevzara.
Everybody is different.
Best wishes.

Jump to this post

@stonewheel this is some very good advice to the person that has inquired. to hear about the flare at 1 mg My advice is to try to continue to get off the prednisone without adding the biologic at this point. I decided to take the plunge in 2024 and went from 1 mg to zero. Still off prednisone with no biologic.

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There's also such a thing as prednisone withdrawal that can not only involve the delayed return of adrenal function but also the steroid withdrawal itself. That steroid withdrawal is real and can last several weeks, making it difficult to distinguish between a PMR flare and steroid withdrawal syndrome.

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Profile picture for jandee @jandee

I did just that. I'd tapered to zero but was in extreme pain. Tried Methotrexate and it did nothing. Went back to 5mg of Prednisone (with one or two Tylenol arthritis tabs depending on activities and pain level) and started Kevzara. It is said to take three months to be effective. I have had three shots - six weeks - and am down to 2.5mg Pred. Pain was somewhat less at first, probably from the 5mg of steroids, but unexpectedly improved dramatically a week ago. Still some stiffness and minor pain, but I'll take it! I have no idea whether this is due to Kevzara or a natural remission. I am 78 and otherwise healthy and have been on the PMR journey for 18 months.

Jump to this post

@jandee
Not to be contrary, but isn't 3 shots only 4 weeks and 1 day, the first shot being day 1?

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I also started on Prednisone in Nov 25, and am now at 4mg. You said you're on a slow taper but being at 1mg already I'd say you were on a crazy fast taper.

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