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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@johnbishop

@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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Since I am really pretty new to this and can’t find a lot of great written material there’s a lot I still don’t know. I didn’t realize you could be in remission and have it come back much later. As far as you know is there any definitive research as to the cause of PMR??

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@elt

Since I am really pretty new to this and can’t find a lot of great written material there’s a lot I still don’t know. I didn’t realize you could be in remission and have it come back much later. As far as you know is there any definitive research as to the cause of PMR??

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Here are a few scholarly articles on PMR. There are quite a few. Google Scholar is helpful when searching for the latest medical info - https://scholar.google.com/.

-- An update on polymyalgia rheumatica:
https://onlinelibrary.wiley.com/doi/full/10.1111/joim.13525
-- Patients' views on the causes of their polymyalgia rheumatica: a content analysis of data from the PMR Cohort Study: https://bmjopen.bmj.com/content/7/1/e014301

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@johnbishop

Here are a few scholarly articles on PMR. There are quite a few. Google Scholar is helpful when searching for the latest medical info - https://scholar.google.com/.

-- An update on polymyalgia rheumatica:
https://onlinelibrary.wiley.com/doi/full/10.1111/joim.13525
-- Patients' views on the causes of their polymyalgia rheumatica: a content analysis of data from the PMR Cohort Study: https://bmjopen.bmj.com/content/7/1/e014301

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This is great thank you so much! I will be reading these tomorrow.

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Hi. I am new to this group (and Mayo Connect). My question is when tapering and have a flare up, what is a reasonable dose and schedule to go up to to remove the pain. Some background. I was diagnosed with PMR 4 years ago. Tapered very quickly, and was off within 18 months. Symptoms started to creep back slowly and got worse over the next 24 months. During this time the treatment was concentrated on muscle issues- and physio. ESR never got up really high, just slightly higher over normal range so Dr didn't think it was a PMR relapse. Pain got so unbearable, Dr put me back on Prednisone (20 mg) and symptoms were totally alleviated within 2 days. so back to a PMR diagnosis (relapse). This last year (since Oct 2021) I have been on Prednisone, and had tapered to 7.5mg/day. In Aug I got COVID, then had a few insect bites - which did not heal quickly - they all got quite inflamed and lasted a very long time (4 weeks with blistering of skin etc). During this time, PMR symptoms got worse, such that 10 days ago, symptoms were so painful I felt it was a relapse. Dr recommended to go up to 10mg, but this has not reduced the pain levels. My question - Not sure why the relapse, but should I grin and bear it at 10 and hope the symptoms calm down, or should I inquire about going up to 20mg and start over. Any experience on how to deal with a flare up would be appreciated.

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@keetaboy

Hi. I am new to this group (and Mayo Connect). My question is when tapering and have a flare up, what is a reasonable dose and schedule to go up to to remove the pain. Some background. I was diagnosed with PMR 4 years ago. Tapered very quickly, and was off within 18 months. Symptoms started to creep back slowly and got worse over the next 24 months. During this time the treatment was concentrated on muscle issues- and physio. ESR never got up really high, just slightly higher over normal range so Dr didn't think it was a PMR relapse. Pain got so unbearable, Dr put me back on Prednisone (20 mg) and symptoms were totally alleviated within 2 days. so back to a PMR diagnosis (relapse). This last year (since Oct 2021) I have been on Prednisone, and had tapered to 7.5mg/day. In Aug I got COVID, then had a few insect bites - which did not heal quickly - they all got quite inflamed and lasted a very long time (4 weeks with blistering of skin etc). During this time, PMR symptoms got worse, such that 10 days ago, symptoms were so painful I felt it was a relapse. Dr recommended to go up to 10mg, but this has not reduced the pain levels. My question - Not sure why the relapse, but should I grin and bear it at 10 and hope the symptoms calm down, or should I inquire about going up to 20mg and start over. Any experience on how to deal with a flare up would be appreciated.

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Welcome @keetaboy, There are some conditions that mimic PMR. If it were me, I might want a referral from my doctor to a rheumatologist who knows more than a typical doctor about PMR and similar conditions. Here's an article on the topic that might shed some light...

-- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

I don't think I would grin and bear it if upping to 10 mgs didn't get rid of the pain but I would let the doctor know. Prednisone at the correct dose should alleviate the pain within hours not days (my non medical opinion from my own experience).

Have you talked with the doctor to let him know the 10 mg isn't cutting it?

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@johnbishop

Welcome @keetaboy, There are some conditions that mimic PMR. If it were me, I might want a referral from my doctor to a rheumatologist who knows more than a typical doctor about PMR and similar conditions. Here's an article on the topic that might shed some light...

-- Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

I don't think I would grin and bear it if upping to 10 mgs didn't get rid of the pain but I would let the doctor know. Prednisone at the correct dose should alleviate the pain within hours not days (my non medical opinion from my own experience).

Have you talked with the doctor to let him know the 10 mg isn't cutting it?

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Thanks for the quick response. Yes - have just called my Dr. (Dr is a rheumatologist) Unfortunately I am at the start of a sabbatical, so hoping I can get transferred and get some advice from a colleague. Am tempted to just go to 20 to get rid of the severe pain and plead forgiveness later (if that wasn't the advice).

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@keetaboy

Thanks for the quick response. Yes - have just called my Dr. (Dr is a rheumatologist) Unfortunately I am at the start of a sabbatical, so hoping I can get transferred and get some advice from a colleague. Am tempted to just go to 20 to get rid of the severe pain and plead forgiveness later (if that wasn't the advice).

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I'm thinking that's exactly what I would do. Hoping you find some relief for the pain soon!

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Typical flare treatment is to go up 5 mg. for 5-10 days. If stabilized you should be able to reduce to the last dose that worked well.

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I feel you are tapering much too fast. Remember this is not a race.

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I agree. As much as I dislike being on prednisone, I am having success tapering down 1 mg a month under the supervision of my rheumatologist. I am now down to 2 mg, and although it has taken 8 months, I would recommend taking it slowly.

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