Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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What is the most common way to taper off 3 mg prednisone?

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@bardy1953

What is the most common way to taper off 3 mg prednisone?

Jump to this post

Hi @bardy1953, Welcome to Connect. That's a great question and the answer might be easier than you think. You will notice that we moved your post to an existing discussion on the same topic here:

-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
The biggest qualifier is that each of us have different levels of acceptable pain and what I've always been told by my rheumatologist was that I should listen to my body when I'm tapering. If it were me I would try to go down by 1 mg a month. With my first occurrence of PMR it took me 3 and half years to taper off and the last six months were going back and forth between 1 mg and 1/2 mg until I could finally stop taking it without much pain.

@flymetothemoon @sharb @biblern @tsc @suetex @barbararene and others may also have some thoughts on tapering off of 3 mg prednisone.

How long have you been on prednisone?

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@johnbishop

Hi @bardy1953, Welcome to Connect. That's a great question and the answer might be easier than you think. You will notice that we moved your post to an existing discussion on the same topic here:

-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
The biggest qualifier is that each of us have different levels of acceptable pain and what I've always been told by my rheumatologist was that I should listen to my body when I'm tapering. If it were me I would try to go down by 1 mg a month. With my first occurrence of PMR it took me 3 and half years to taper off and the last six months were going back and forth between 1 mg and 1/2 mg until I could finally stop taking it without much pain.

@flymetothemoon @sharb @biblern @tsc @suetex @barbararene and others may also have some thoughts on tapering off of 3 mg prednisone.

How long have you been on prednisone?

Jump to this post

Took almost 3 years and got down to 1/2 mg. Having pain again, so now I'm taking 1 mg every other day and hopefully will stay at 1/2 and then get off. I don't think this pain will go away so quickly. I also have Celebrex when its bad. I do think stress can contribute to this so it's important to find ways to minimize that stress. It's a journey for sure.

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I’m new to this site and so glad I found it. I’m also fairly new to PMR. Mine started about 5 months ago with pain in my neck and upper legs. Celebrex helped me a lot but I saw an endocrinologist and got an accurate diagnosis and then started prednisone the middle of July. I started with 1 mg and ratcheted it up by 1 mg every two or three days until I reached 8 mg. After a few days I felt good with no pain and a lot of energy. I was on 8 mg for about six weeks. My doctor wanted me to try tapering down a little bit so I have now been on 7 mg for a little over a week. I felt spacey and low energy for four or five days but now feel OK and have minor pain.
My big question, that I can’t seem to find an answer to, is…
To achieve long-term remission is it necessary to stay on prednisone until you can taper slowly without the pain returning? I understand that it is important to be on a dosage that deals with the pain completely. Then, when tapering down, do you have to stop tapering or go back up if the pain continues?
I have the beginning of osteoporosis so that is one of my major concerns regarding staying on prednisone too long.
PS. I have also found that curcumin and ginger pills help with minor pain.

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@elt

I’m new to this site and so glad I found it. I’m also fairly new to PMR. Mine started about 5 months ago with pain in my neck and upper legs. Celebrex helped me a lot but I saw an endocrinologist and got an accurate diagnosis and then started prednisone the middle of July. I started with 1 mg and ratcheted it up by 1 mg every two or three days until I reached 8 mg. After a few days I felt good with no pain and a lot of energy. I was on 8 mg for about six weeks. My doctor wanted me to try tapering down a little bit so I have now been on 7 mg for a little over a week. I felt spacey and low energy for four or five days but now feel OK and have minor pain.
My big question, that I can’t seem to find an answer to, is…
To achieve long-term remission is it necessary to stay on prednisone until you can taper slowly without the pain returning? I understand that it is important to be on a dosage that deals with the pain completely. Then, when tapering down, do you have to stop tapering or go back up if the pain continues?
I have the beginning of osteoporosis so that is one of my major concerns regarding staying on prednisone too long.
PS. I have also found that curcumin and ginger pills help with minor pain.

Jump to this post

Welcome @elt, I think you hit the nail on the head. Prednisone keeps the pain and inflammation at bay until you can stop taking the prednisone and only have what I like to think of as my new normal morning minor aches until I get out of bed and start moving a little.

My rheumatologist had me only taper when the pain was acceptable. I kept a daily pain and dosage log and for me acceptable was a 1 or 2 on a scale to 10. If it was higher, I either stayed on the current dose or upped it a little. I also take turmeric curcumin everyday along with some supplements for my neuropathy.

Have you made any lifestyle changes with diet or exercise?

REPLY
@johnbishop

Hi @bardy1953, Welcome to Connect. That's a great question and the answer might be easier than you think. You will notice that we moved your post to an existing discussion on the same topic here:

-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
The biggest qualifier is that each of us have different levels of acceptable pain and what I've always been told by my rheumatologist was that I should listen to my body when I'm tapering. If it were me I would try to go down by 1 mg a month. With my first occurrence of PMR it took me 3 and half years to taper off and the last six months were going back and forth between 1 mg and 1/2 mg until I could finally stop taking it without much pain.

@flymetothemoon @sharb @biblern @tsc @suetex @barbararene and others may also have some thoughts on tapering off of 3 mg prednisone.

How long have you been on prednisone?

Jump to this post

Hi @bardy1953, I initially was put on 40 mg of prednisone for Giant Cell Arteritis in late May 2021. When I got down to 3 mg, my rheumatologist suggested I stay on it for a month, then taper down to 2 mg for a month, then 1 mg for a month, then .5 mg for a month. I'm now down to .5mg every other day until my pills run out.

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@johnbishop

Welcome @elt, I think you hit the nail on the head. Prednisone keeps the pain and inflammation at bay until you can stop taking the prednisone and only have what I like to think of as my new normal morning minor aches until I get out of bed and start moving a little.

My rheumatologist had me only taper when the pain was acceptable. I kept a daily pain and dosage log and for me acceptable was a 1 or 2 on a scale to 10. If it was higher, I either stayed on the current dose or upped it a little. I also take turmeric curcumin everyday along with some supplements for my neuropathy.

Have you made any lifestyle changes with diet or exercise?

Jump to this post

Thanks so much for your response. I had a fairly healthy diet to begin with as I tend to follow the O blood type diet for the most part. I i’ve been ordering grass fed meat from Trifecta which has been helpful. I eat very little sugar, very little dairy, no wheat, no alcohol currently and only two or three drinks a week prior to PMR. I’ve exercised at least six times a week for at least 40 years. I have a fair amount of allergies also so there’s a lot of different things there that I don’t eat. I was really surprised when I came down with this. I guess I’m primarily worried about my change in bone density as I choose not to take any of the meds like Fosamax or prolia. I take a lot of supplements but I have a family history of osteoporosis. I have a wonderful naturopath who has helped me tremendously. I am a behavioral psychologist so I do keep a lot of data also. It sounds like you’ve got things figured out pretty well for yourself. How long have you had PMR?

REPLY
@elt

Thanks so much for your response. I had a fairly healthy diet to begin with as I tend to follow the O blood type diet for the most part. I i’ve been ordering grass fed meat from Trifecta which has been helpful. I eat very little sugar, very little dairy, no wheat, no alcohol currently and only two or three drinks a week prior to PMR. I’ve exercised at least six times a week for at least 40 years. I have a fair amount of allergies also so there’s a lot of different things there that I don’t eat. I was really surprised when I came down with this. I guess I’m primarily worried about my change in bone density as I choose not to take any of the meds like Fosamax or prolia. I take a lot of supplements but I have a family history of osteoporosis. I have a wonderful naturopath who has helped me tremendously. I am a behavioral psychologist so I do keep a lot of data also. It sounds like you’ve got things figured out pretty well for yourself. How long have you had PMR?

Jump to this post

@elt My PMR is in remission but my first flare up was in 2007, lasted 3-1/2 years then went into remission until 2016 and lasted 1-1/2 years. My second time around I started eating healthier and cut out processed foods and cut way down on the sugar along with more exercise. I'm hoping it stays in remission 🙂.

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You are tapering too fast. It is not a race.

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@bardy1953

What is the most common way to taper off 3 mg prednisone?

Jump to this post

I would, at first, go down 1 mg. a month. If this is not good go to 1/2 mg a month.

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