1. < Polymyalgia Rheumatica (PMR)

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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flymetothemoon | @flymetothemoon | Oct 5, 2022
In reply to @mary4 "Is anyone taking Prolia, to prevent bone loss while on prednisone? If yes, did it aggravate..." + (show)
@mary4

Is anyone taking Prolia, to prevent bone loss while on prednisone? If yes, did it aggravate your PMR. Any side effects? Thanks as always for sharing your experience.

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I am treating bone density with Reclast Infusions. My Rheumatologist and Endocrinologist recommend it over the Prolio. Since Prednisone can cause bone loss it is important to treat the bones for Osteoporosis and low bone density. Both are treatments. Reclast is done once a year for 3 consecutive years. Then if your density is good you are done. I have my third in March so hopefully it worked. Good luck.

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1 reply
mary4 | @mary4 | Oct 5, 2022
In reply to @flymetothemoon "I am treating bone density with Reclast Infusions. My Rheumatologist and Endocrinologist recommend it over the..." + (show)
@flymetothemoon

I am treating bone density with Reclast Infusions. My Rheumatologist and Endocrinologist recommend it over the Prolio. Since Prednisone can cause bone loss it is important to treat the bones for Osteoporosis and low bone density. Both are treatments. Reclast is done once a year for 3 consecutive years. Then if your density is good you are done. I have my third in March so hopefully it worked. Good luck.

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Any side effects? Thank you.

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1 reply
flymetothemoon | @flymetothemoon | Oct 5, 2022
In reply to @mary4 "Any side effects? Thank you." + (show)
@mary4

Any side effects? Thank you.

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Not so far. Lot of maintenance in these years. Exhausting. 😀

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scpartain | @scpartain | Oct 6, 2022
In reply to @mary4 "Is anyone taking Prolia, to prevent bone loss while on prednisone? If yes, did it aggravate..." + (show)
@mary4

Is anyone taking Prolia, to prevent bone loss while on prednisone? If yes, did it aggravate your PMR. Any side effects? Thanks as always for sharing your experience.

Jump to this post

I had been diagnosed with osteoporosis prior to my latest PMR flare, so the rheumatologist prescribed Prolia injections along with prednisone therapy. Two months after the first Prolia shot I experienced intense jaw pain and was eventually diagnosed with osteonecrosis of the jaw. During this time I was able to successfully taper off of prednisone and the PMR has been in remission for over a year. Although there remains some residual pain, stiffness and limitation of movement, it is nothing to the disabling symptoms of PMR. Osteoporosis is an ongoing concern as the options are limited.

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virginiaj | @virginiaj | Oct 8, 2022

How are they treating the osteonecrosis?

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lymanola | @lymanola | Dec 15, 2022
In reply to @rosemarya "@barbararene, Yes, every other day meant that I took my 2.5 mg dose one day, and..." + (show)
@rosemarya

@barbararene, Yes, every other day meant that I took my 2.5 mg dose one day, and then I skipped a day. Then took it , then skipped a day.
After doing this for about a month, with no pain, I even began to break these tiny half pills into half again, and followed the same every other day pattern with the teeny piece of pill (1.25 mg). Then I got brave and skipped two days, then quit. 🙂

I find it interesting one of my doctors said I should have no problem going off that small of a dose (5 mg). I guess that just shows that we really are all different in how our body reacts to different medications. It was my transplant team who suggested the NASA countdown taper: 5...4...3...2...1...And it was my PCP who suggested the every other day taper.
I hope you find a taper pattern that works for you.
Rosemary

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Thanks for these comments. I am new to this site, beginning my second year of PMR. I started on 20 mg daily and have managed to exercise throughout this awful year. I have been down to 2 1/2 mg every other day for two weeks and I am trying to figure out how to ditch prednisone altogether. I will try breaking these in half and continuing as you described. Wish me luck.
I do think the key to this mysterious condition is to stay mobile and to try to eat well. While I do not swim daily as I once did, I have been getting into a kayak or walking regularly.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 15, 2022
In reply to @lymanola "Thanks for these comments. I am new to this site, beginning my second year of PMR...." + (show)
@lymanola

Thanks for these comments. I am new to this site, beginning my second year of PMR. I started on 20 mg daily and have managed to exercise throughout this awful year. I have been down to 2 1/2 mg every other day for two weeks and I am trying to figure out how to ditch prednisone altogether. I will try breaking these in half and continuing as you described. Wish me luck.
I do think the key to this mysterious condition is to stay mobile and to try to eat well. While I do not swim daily as I once did, I have been getting into a kayak or walking regularly.

Jump to this post

Hello @lymanola, Welcome to Connect. Tapering off of prednisone can be the difficult. My first time with PMR took 3-1/2 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no aches/pains in the morning. If you you problems you may want to give this tapering plan a try also.

-- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

You might also find the following discussion helpful:
-- PMR Dosages and Managing Symptoms
https://connect.mayoclinic.org/discussion/pmr-dosages/

Do you keep a daily log with your pain level when you get up along with the dosage of prednisone for that day?

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2 replies
lymanola | @lymanola | Dec 15, 2022
In reply to @johnbishop "Hello @lymanola, Welcome to Connect. Tapering off of prednisone can be the difficult. My first time..." + (show)
@johnbishop

Hello @lymanola, Welcome to Connect. Tapering off of prednisone can be the difficult. My first time with PMR took 3-1/2 years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I could finally stop taking it with little to no aches/pains in the morning. If you you problems you may want to give this tapering plan a try also.

-- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

You might also find the following discussion helpful:
-- PMR Dosages and Managing Symptoms
https://connect.mayoclinic.org/discussion/pmr-dosages/

Do you keep a daily log with your pain level when you get up along with the dosage of prednisone for that day?

Jump to this post

Thank you

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sharonanng | @sharonanng | Dec 15, 2022
In reply to @lymanola "Thanks for these comments. I am new to this site, beginning my second year of PMR...." + (show)
@lymanola

Thanks for these comments. I am new to this site, beginning my second year of PMR. I started on 20 mg daily and have managed to exercise throughout this awful year. I have been down to 2 1/2 mg every other day for two weeks and I am trying to figure out how to ditch prednisone altogether. I will try breaking these in half and continuing as you described. Wish me luck.
I do think the key to this mysterious condition is to stay mobile and to try to eat well. While I do not swim daily as I once did, I have been getting into a kayak or walking regularly.

Jump to this post

Do get a pill cutter. They are inexpensive and really help in cutting prednisone in half. Also, 1 mg pills are available.

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avidhiker | @avidhiker | Dec 16, 2022

Hi, All. I joined this forum about a month ago. I had been within weeks of getting off prednisone after 2 1/2 years, slowly tapering and adding Methotrexate. Suddenly I was having a horrible flareup that I attributed to increased exercise and finishing off the Halloween treats. I went up to 5 mg for a week, then 4, and now 3. I eliminated almost all refined sugar from my diet, and am walking only as far as the dogs want to. Now there is very little pain, just discomfort really, and I hope to be back to 2 mg for several weeks and then 1.

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