1. < Polymyalgia Rheumatica (PMR)

Prednisone tapering is challenging. What does remission feel like?

Posted by jmcc @jmcc, Oct 18, 2021

Hi all what’s remission feel like? Does it only happen when I’m completely off prednisone or can remission occur while I’m tapering?

I’ve had PMR for a year and three months and I’ve been on prednisone for a year. I have been able to taper down to 4mg per day with some manageable pain and moodiness, but 2 days ago my head cleared and I felt like my happy self again. I’m still a little achy but really thrilled that I’m not cranky/spacey/frustrated.

Can I accelerate the taper? Any advice?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

vellen | @vellen | Jul 13, 2023
In reply to @magluchi "I have been on prednisone for over 5 years for fibromyalgia. Several times I have tapered..." + (show)
@magluchi

I have been on prednisone for over 5 years for fibromyalgia. Several times I have tapered down and tried other drugs. The other drugs had serious side effects and I have none with prednisone. I am lucky that a low dose of 4 or 5 mg controls the majority of my Fibro pain. So, I have learned to live with the other fibromyalgia symptoms, because the pain is the worst.

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I haven't noticed any relief from my fibro pain with the Prednisone, I wish it did. I still take Tramadol for that and will move on to Topamax soon for the fibro as well as to try to prevent migraines.

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vellen | @vellen | Jul 13, 2023
In reply to @hunib33 "Yes, prednisone causes a lot of side affects as you may know and stomach issues is..." + (show)
@hunib33

Yes, prednisone causes a lot of side affects as you may know and stomach issues is one my doctor was trying to prevent. From what I’ve read, and from talking to my doctor, prednisone should NOT be taken on an empty stomach and the buffer medication is further protection.

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Reposted to the correct person.

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1 reply
hunib33 | @hunib33 | Jul 13, 2023
In reply to @vellen "Reposted to the correct person." + (show)
@vellen

Reposted to the correct person.

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I do not have fibromyalgia and have never been diagnosed with it. I have PMR. I trust, and utmost confidence in my doctor’s advice and the medications she prescribes. Period.

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1 reply
vellen | @vellen | Jul 13, 2023
In reply to @hunib33 "I do not have fibromyalgia and have never been diagnosed with it. I have PMR. I..." + (show)
@hunib33

I do not have fibromyalgia and have never been diagnosed with it. I have PMR. I trust, and utmost confidence in my doctor’s advice and the medications she prescribes. Period.

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My apology, I must have replied to the wrong post.
No need to be snarky about it. Cheers

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1 reply
vellen | @vellen | Jul 13, 2023
In reply to @magluchi "I have been on prednisone for over 5 years for fibromyalgia. Several times I have tapered..." + (show)
@magluchi

I have been on prednisone for over 5 years for fibromyalgia. Several times I have tapered down and tried other drugs. The other drugs had serious side effects and I have none with prednisone. I am lucky that a low dose of 4 or 5 mg controls the majority of my Fibro pain. So, I have learned to live with the other fibromyalgia symptoms, because the pain is the worst.

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Is it possible that your fibromyalgia pain is actually PMR and that being treated with Prednisone, leaves you with Fibro pain? I ask because it can often be misdiagnosed and that you still have fibro pain with the corticosteroid.
"Drugs such as NSAIDs, opioids and corticosteroids have not been found to be effective for fibromyalgia pain.".
If it js PMR then it's a good thing you are on the Prednisone. But perhaps see about Topamax, especially if you're like me and can't tolerate the SNRI or SSRi meds.
Forgive me jf I'm off-base but obviously I have Fibro (20+ years now) and PMR came in end of May this year. I was sure the fibro was worsening until I couldn't move without pain or walk without assistance. It was because of the PMR.

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1 reply
magluchi | @magluchi | Jul 13, 2023
In reply to @vellen "Is it possible that your fibromyalgia pain is actually PMR and that being treated with Prednisone,..." + (show)
@vellen

Is it possible that your fibromyalgia pain is actually PMR and that being treated with Prednisone, leaves you with Fibro pain? I ask because it can often be misdiagnosed and that you still have fibro pain with the corticosteroid.
"Drugs such as NSAIDs, opioids and corticosteroids have not been found to be effective for fibromyalgia pain.".
If it js PMR then it's a good thing you are on the Prednisone. But perhaps see about Topamax, especially if you're like me and can't tolerate the SNRI or SSRi meds.
Forgive me jf I'm off-base but obviously I have Fibro (20+ years now) and PMR came in end of May this year. I was sure the fibro was worsening until I couldn't move without pain or walk without assistance. It was because of the PMR.

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Thank you for your comments. I was diagnosed at Mayo by a Rheumotologist in 2014. Fortunately, for me, prednisone does work, and when I have a serious episode, I increase my dose and then titrate down(only recently discovered this solution during an ER visit at a Mayo.). Because of the (mis) belief that prednisone does not work for fibromyalgia, I struggle with doctors that agree with this philosophy and won’t support my medication solution. I have tried other medication’s to include gabapentin most recently. Gabapentin gave me many side effects that I did not like, on the flip-side, it took away many of the idiosyncrasies of fibromyalgia, like not being able to eat anything that is not homemade without side effects (due to additives, preservatives, colorings, etc). Oh, well, having the pain greatly diminished is worth the inconvenience and any negative impacts on my body.

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2 replies
vellen | @vellen | Jul 13, 2023
In reply to @magluchi "Thank you for your comments. I was diagnosed at Mayo by a Rheumotologist in 2014. Fortunately,..." + (show)
@magluchi

Thank you for your comments. I was diagnosed at Mayo by a Rheumotologist in 2014. Fortunately, for me, prednisone does work, and when I have a serious episode, I increase my dose and then titrate down(only recently discovered this solution during an ER visit at a Mayo.). Because of the (mis) belief that prednisone does not work for fibromyalgia, I struggle with doctors that agree with this philosophy and won’t support my medication solution. I have tried other medication’s to include gabapentin most recently. Gabapentin gave me many side effects that I did not like, on the flip-side, it took away many of the idiosyncrasies of fibromyalgia, like not being able to eat anything that is not homemade without side effects (due to additives, preservatives, colorings, etc). Oh, well, having the pain greatly diminished is worth the inconvenience and any negative impacts on my body.

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You're very welcome and I am glad the prednisone works for your pain. I thought I'd just check.

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hunib33 | @hunib33 | Jul 13, 2023
In reply to @vellen "My apology, I must have replied to the wrong post. No need to be snarky about..." + (show)
@vellen

My apology, I must have replied to the wrong post.
No need to be snarky about it. Cheers

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Whatever….

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pkalkstein | @pkalkstein | Jul 13, 2023
In reply to @skiing "I am on 9 mg daily now and stiff each morning. On a stiffness scale usually..." + (show)
@skiing

I am on 9 mg daily now and stiff each morning. On a stiffness scale usually a 3 to 5 out of 10 by 11 am I am fine. Each time I have tapered before and after the dose reduction I have been stiff. Does anyone experience no or minimal stiffness while tapering. I will go to 8 mg after a month. I am wondering if I am tapering too fast. I have been following a recommended schedule.

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I had almost no stiffness while going slowly down from 20 to 10mg of prednisone. Even more slowly I got to 9, and was OK. Now at 8 I am stiff again the morning but it goes away after an hour. Most folks seem to have some difficulties below 10mg and I guess I am no exception.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 14, 2023
In reply to @magluchi "Thank you for your comments. I was diagnosed at Mayo by a Rheumotologist in 2014. Fortunately,..." + (show)
@magluchi

Thank you for your comments. I was diagnosed at Mayo by a Rheumotologist in 2014. Fortunately, for me, prednisone does work, and when I have a serious episode, I increase my dose and then titrate down(only recently discovered this solution during an ER visit at a Mayo.). Because of the (mis) belief that prednisone does not work for fibromyalgia, I struggle with doctors that agree with this philosophy and won’t support my medication solution. I have tried other medication’s to include gabapentin most recently. Gabapentin gave me many side effects that I did not like, on the flip-side, it took away many of the idiosyncrasies of fibromyalgia, like not being able to eat anything that is not homemade without side effects (due to additives, preservatives, colorings, etc). Oh, well, having the pain greatly diminished is worth the inconvenience and any negative impacts on my body.

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Hello @magluchi, I would like to add my welcome to Connect along with @vellen, @hunib33 and others. Prednisone was my magic pill for PMR pain also. Have you also been diagnosed with PMR along with Fibromyalgia?

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