Any Tips For Tapering Off Prednisone?

I have had one for three years and the rheumatologist does a very poor job of guiding me through lowering prednisone. I have learned more from this group than the doc

I recently had a flare and the doc put me up to 20 again. He than brought me to 15 after a month and gave me an appointment in 6 months but said reduce to 10 after a month on 15 and go to 5 after that and stay there. I have done this before and have always gotten a flare at 5

Currently I am at 10. After refacing all your experiences I feel like I should do 9 1/2 after a month, then go to 9 for a month and just stay at that rate monitoring pain and stiffness as a progress
What are your thoughts

At what point should you be measuring Cortisol levels. And what is an acceptable level

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.

@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!

"At what point should you be measuring cortisol levels. And what is an acceptable level"

Testing for a low cortisol level isn't so easy to do. My endocrinologist said I needed to be "stabilized" on 3 mg of prednisone or less. I took that to mean I needed to be able to stay on 3 mg of prednisone without having a PMR flare long enough for my body to be "adjusted" to 3 mg of prednisone.

A cortisol level is hard to measure because of how prednisone interacts with the production of cortisol by the adrenals. The way I understand it --- your cortisol level will be low on higher doses of prednisone. That is because prednisone replaces the cortisol that our adrenals should be producing.

Supposedly 3 mg of prednisone is low enough to allow the adrenals to sense a low cortisol level. Ideally, the adrenals should react instantly but that doesn't happen when we take prednisone. It can take a long time for the adrenal to react. This is referred to as chronic adrenal suppression as a side effect from prednisone use.

CHRONIC ADRENAL SUPPRESSION
The goal in treating chronic adrenal suppression is to replace Prednisone in a fashion that will permit a reasonable quality of life and at the same time encourage recovery of normal hypothalamic-pituitary-adrenal function which is also known as the HPA axis.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
This is a very complex mechanism and probably explains why we have PMR flares when we are stressed. Taking manufactured forms of glucocorticoids (corticosteroids) for rheumatology conditions may increase your risk of HPA axis suppression.

The best way to get this mechanism functioning again is to taper prednisone slowly so as to allow the adrenals time to start producing cortisol again.

Sorry ... according to my endocrinologist, there is no prednisone tapering scheme that works well enough to say one way works any better than another way.

Measuring my cortisol level wasn't that reliable either. My morning 8 a.m cortisol level was measured when I was able to stay on 3 mg of prednisone. My cortisol level was low as expected because I was on Prednisone for a very long time.

What biologic did you use? Really interested. Thank you.

I have been tapering for about 6 months now. I started at 20mg and am working on 5mg. Once I got below 10 I did have some minor discomfort. Each time I found I had an adjustment period. Right now I'm not sure what is going on. This is something a little new for me. I have been on 5mg for 4 weeks now. A couple of weeks ago I had about 4 days when there were no issues. Not even the minor ones. It was great! It didn't last obviously but I seem to have another change. I recognize the usual aches and pains in the morning but now I seem to have discomfort later in the day and evening which I didn't seem to notice before. It's not really a pain but a ache/discomfortable feeling in my right hamstring and my upper arms. I have even had a few mornings where the pain was more noticeable for a time. I am frustrated as to what is going on! I have actually tried 6 mg a few times but am afraid to consistently do it because I don't want to be going backwards.
My dr wanted me to return to 10mg at my last visit the end of July because she says there should be no pain. I had just started 5mg at that time. I told her I did not want to go back up again and that the pain level was manageable. I haven't gone back up to 10mg yet and I hope I don't have to. My next visit is this week. (She does know I am at 5mg still.)
I have read here that some of you are doing the alternating between doses. Not sure what it's called. My dr has said nothing about it in any visit. I don't know that she has any long term plans of a tapering schedule. I'm not sure if there is a schedule guideline to follow. Is it a good thing to try?
Wondering what is going on and what to do has given me more anxiety and I feel so indecisive. I am the type of person that likes to know "the plan" I guess.

Sometimes I'm reluctant to say which biologic because tapering off prednisone wasn't simply a matter of switching to a biologic. In fact, my rheumatologist wasn't even sure which biologic might work the best for me.

Actemra, (tocilizumab) was what worked for me. My rheumatologist told me about research that was done with this biologic to treat GCA. The problem was my diagnosis was PMR without much evidence of GCA. My rheumatologist had to get authorization for me to get Actemra. The authorization request was approved with the understanding I would be treated "as if" I had GCA.

I had a good response to Actemra. I quickly tapered down to 3 mg of prednisone but I needed to stay on 3 mg of prednisone for a long time because of adrenal suppression. Much of the stuff about cortisol comes from an endocrinologist that I was referred to. She made me aware that some people are never able to taper off prednisone because of adrenal suppression. There was no guarantee that I would be able to taper off prednisone. For that matter, my rheumatologist didn't guarantee Actemra would work for PMR.

Actemra worked very well for me but not without some unexpected problems. I have more than one autoimmune disorder. This isn't uncommon. Sometimes people are misdiagnosed but many times people have more than one autoimmune condition.

My rheumatologist said Actemra might work for PMR but might not work for something else. Actemra was tried first and targeted PMR. Fortunately, Actemra seems to be working for my other autoimmune condition as well. However, my other condition did flare up as soon as I got off prednisone the first time. The fact that I got off prednisone at all was remarkable and it was something to build on.

This was all happening in 2019 when there was no biologic that was FDA approved for PMR. Now the FDA has approved a biologic for PMR that is called Kevzara (sarilumab). In theory, either Actemra or Kevzara might work for PMR except the research hasn't been done for Actemra to treat PMR. Actemra has only been FDA approved for the treatment of GCA.

You might be an exception. Most patients want to go back to a higher dose and it is their rheumatologist who doesn't want them to.

My rhematologist gave me some leeway to increase my dose when it was "absolutely necessary" but I needed to justify what was absolutely necessary. Now that I'm off prednisone, I think my rheumatologist gave me too much leeway.

I took the advice of never reducing by more than 10% at a time from my current dosage. For me, 5mg was the sticking point. I had been tapering at the rate of .5mg every 10-11 days, but 4.5mg was uncomfortable (sore arms) and 4mg worse (VERY sore arms). At that point I returned to 5mg for one day, then starting tapering by .25mg using a pill splitter. Relief was pretty much instant. By the time I finished, I was dividing 1mg pills into four and 5mg pills into eight - the math got interesting. I had also stopped having any reaction to tapers, and at some point changed over to a week rather than 10 days.

I've been off Prednisone for eight weeks. To be honest, I don't feel exactly as I did prior to getting PMR a year ago, but I'm fully functional and most discomfort can be shrugged off as maybe-age-related.

Thanks so much for replying. I tapered down to 1mg. prednisone. Have felt absolutely terrible, So weak and tired. My rheumatologist wanted me to try infusions of (I guess is a biologic) called Symboni. My ins probably won't cover Actemra. After two infusions I can't tell any difference. Maybe worse. They say to wait and I have tried to. Now she wants me to go up to 3 mg of prednisone before I see her In Sept. My whole body ached and I have been miserable and ready to give up completely. I should add my primary thinks I have PMR. My rheumatologist insists I have RA. I know it is hard to diagnose. I had thought my cortisol would have kicked in at such a small amount of prednisone.