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.

OldHen | @oldhen | Nov 25, 2021
In reply to @johnbishop "Hello @oldhen, I didn't understand PMR myself when I was first diagnosed. I had a really..." + (show)
@johnbishop

Hello @oldhen, I didn't understand PMR myself when I was first diagnosed. I had a really good rheumatologist that explained to me that it was like having arthritis all over your body. Prednisone is the gold standard for treatment.
Here's a good article that may help you learn a little more about the condition.

Understanding and managing polymyalgia rheumatica: https://medicinetoday.com.au/sites/default/files/cpd/MT2014-09-47-OWEN.pdf

What has helped me keep PMR under control is changing my lifestyle a little, exercising more and eating a healthier diet containing fewer inflammatory foods. Did your doctor or rheumatologist give you any suggestions or information to help you understand PMR?

Jump to this post

Not really, just that it's an inflammatory disease and keep on with the prednisone. Thank you for the link, John. I continue to read as much about it as I can, and I was told by someone in the medical field that it's a "relatively new" disease, and there isn't an abundance of detailed information. but I haven't actually seen that statement in print. Is that true?
Thank you for your message to me.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Nov 25, 2021
In reply to @oldhen "Not really, just that it's an inflammatory disease and keep on with the prednisone. Thank you..." + (show)
@oldhen

Not really, just that it's an inflammatory disease and keep on with the prednisone. Thank you for the link, John. I continue to read as much about it as I can, and I was told by someone in the medical field that it's a "relatively new" disease, and there isn't an abundance of detailed information. but I haven't actually seen that statement in print. Is that true?
Thank you for your message to me.

Jump to this post

Hi @oldhen, Actually there is a lot of information out there on Polymyalgia Rheumatica (PMR). It is good to learn as much as you can about your condition so that you can make better decisions and ask better questions when discussion options with your doctor or rheumatologist. Here are a few sites that may help you learn some more if you like to read.

-- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/
-- National Organization for Rare Disorders - Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/
-- American College of Rheumatology - Polymalgia Rheumatica: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica

One of the suggestions my rheumatolgist gave to me that was really helpful when I was trying to taper off of prednisone was for me to keep a daily pain log along with how much prednisone I took that day. This helped me determine if I should go to a lower dose on my schedule based on how my body was feeling.

Did your doctor provide any suggestions or set you up with a schedule to help you taper off of prednisone when it's under control?

REPLY
1 reply
mzamyl | @mzamyl | Nov 26, 2021
In reply to @kmeikle1 "Hi there. I'm sorry you are struggling. The typical starting dose is 15-20 mgs. I started..." + (show)
@kmeikle1

Hi there. I'm sorry you are struggling. The typical starting dose is 15-20 mgs. I started with 15 mgs. and two years later I'm still on 9.5. You should only taper if you are feeling reasonably well. And then never more than 10%. Slow and easy does it. According to the Mayo study the average length of PMR is 5.9 years. Some people are in remission in two years. The disease dictates the tapering schedule. Doctors can recommend a tapering schedule though I've found the best advice from PMR forums. Hopefully you'll find the dose where you feel good. If you reduce too fast, the inflammation will get ahead of you and you'll experience too much pain. You can't force a reduction. You have to listen to your body. You need a rheumatologist who will work with you and give you the flexibility you need to find your best path. Best to you. Kathy

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My rheumatologist answered yesterday and put me back up to 15 mg. I have to go have a blood test today to see what the actual numbers are. I feel that is fair. So much about PMR is perception and constantly assessing your body. Sometimes I feel like a poorly assembled Marionette. My shoulders especially are bothering me now. I have a very morbid imagination and my mind often goes to worst case scenario. I dread being unable to to change clothes by myself because of shoulder and muscle pain.

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2 replies
OldHen | @oldhen | Nov 26, 2021
In reply to @johnbishop "Hi @oldhen, Actually there is a lot of information out there on Polymyalgia Rheumatica (PMR). It..." + (show)
@johnbishop

Hi @oldhen, Actually there is a lot of information out there on Polymyalgia Rheumatica (PMR). It is good to learn as much as you can about your condition so that you can make better decisions and ask better questions when discussion options with your doctor or rheumatologist. Here are a few sites that may help you learn some more if you like to read.

-- Diet and Lifestyle Changes That Can Aid in the Treatment of Polymyalgia Rheumatica: https://arthritissj.com/diet-and-lifestyle-changes-that-can-aid-in-the-treatment-of-polymyalgia-rheumatica/
-- National Organization for Rare Disorders - Polymyalgia Rheumatica: https://rarediseases.org/rare-diseases/polymyalgia-rheumatica/
-- American College of Rheumatology - Polymalgia Rheumatica: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Polymyalgia-Rheumatica

One of the suggestions my rheumatolgist gave to me that was really helpful when I was trying to taper off of prednisone was for me to keep a daily pain log along with how much prednisone I took that day. This helped me determine if I should go to a lower dose on my schedule based on how my body was feeling.

Did your doctor provide any suggestions or set you up with a schedule to help you taper off of prednisone when it's under control?

Jump to this post

I will certainly ask him about a schedule when I see him Monday. Thank you for the links John.

REPLY
OldHen | @oldhen | Nov 26, 2021
In reply to @mzamyl "My rheumatologist answered yesterday and put me back up to 15 mg. I have to go..." + (show)
@mzamyl

My rheumatologist answered yesterday and put me back up to 15 mg. I have to go have a blood test today to see what the actual numbers are. I feel that is fair. So much about PMR is perception and constantly assessing your body. Sometimes I feel like a poorly assembled Marionette. My shoulders especially are bothering me now. I have a very morbid imagination and my mind often goes to worst case scenario. I dread being unable to to change clothes by myself because of shoulder and muscle pain.

Jump to this post

Your thoughts are like mine. It scares me alot to think this never goes away and I could be stuck not able to do various things. I have not had all-day-long pain except my fingers which don't want to work right (bad accident many years ago and I smashed all my wrist bones so that is an ongoing issue along with pmr) Hang in there, be positive as you can be, take care!🙂

REPLY
kmeikle1 | @kmeikle1 | Nov 26, 2021
In reply to @mzamyl "My rheumatologist answered yesterday and put me back up to 15 mg. I have to go..." + (show)
@mzamyl

My rheumatologist answered yesterday and put me back up to 15 mg. I have to go have a blood test today to see what the actual numbers are. I feel that is fair. So much about PMR is perception and constantly assessing your body. Sometimes I feel like a poorly assembled Marionette. My shoulders especially are bothering me now. I have a very morbid imagination and my mind often goes to worst case scenario. I dread being unable to to change clothes by myself because of shoulder and muscle pain.

Jump to this post

I feel "poorly assembled" today. Probably too much Thanksgiving. Take those morbid thoughts captive. You really shouldn't have too much pain if you're on the right dose of prednisone. Some days are worse than others, but rarely if ever worst case. By the way, some people (15-20%...including me) have numbers in the normal range even though we have PMR. So you're right: it's not the numbers or a set taper schedule, it's us assessing our bodies and trying to find the lowest level of prednisone where we can continue to live our lives well. And that's not always easy.

REPLY
jmcc | @jmcc | Dec 20, 2021
In reply to @virginiaj "I have read many opinions on tapering and there is a separate thread about it. There..." + (show)
@virginiaj

I have read many opinions on tapering and there is a separate thread about it. There is a method that is called the English method that someone describes in detail. Basically, you keep alternating old dose and new dose until you are on new dose. This is my 3rd bout of PMR, so I have tried lots of methods. I have found that the lower the dose, the harder it gets to lower it. I used to work with endocrinologists and they told me that at the low doses, your body has been treating the prednisone as a replacement and it takes awhile for the adrenal glands to kick in production again. Currently, I will be on prednisone 2 years next month, have been reducing from 4 to 3 mg for the past 3 weeks. I am now taking 3 mg for 2 days, then 4 for one day. I always either split my dose of prednisone or take it all about 6 PM with my supper. I do get stiffness in the evening, but I am a morning person and feel good in the AM with the prednisone in the evening. My rheumatologist is good with all this and my inflammatory markers are staying down. I feel I will get to 3 in a week or two and then stay there for at least a month before trying to decrease again. Patience and a physician who listens is the key. The first time I had PMR, I was on prednisone 2 years, followed by remission of 12 years, the second time I was off in 10 months, but the PMR recurred big time 8 months later, but in retrospect, I think it was not really gone as I had all sorts of strange symptoms which I attributed to other things. This time I am taking my rime

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Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I take it as early as possible in the day because I have had trouble sleeping.

For the past week I’m tapering at 4MG every other day but have pain in my shoulders at night. I’m wondering if I should try shifting my dose to the afternoon or evening. Anyone have thoughts on this?

REPLY
2 replies
virginiaj | @virginiaj | Dec 20, 2021
In reply to @jmcc "Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I..." + (show)
@jmcc

Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I take it as early as possible in the day because I have had trouble sleeping.

For the past week I’m tapering at 4MG every other day but have pain in my shoulders at night. I’m wondering if I should try shifting my dose to the afternoon or evening. Anyone have thoughts on this?

Jump to this post

I have the opposite problem. If the prednisone is “wearing off”, I get stiff in the shoulders and some pain so have trouble sleeping. Right now I am on 3 mg and take with my supper around 5:30 -6:00. When I was on the bigger doses, I split the dose, taking some in the morning and some at night. It is interesting to me that if I forgot to take even the small dose, I wake up about 2:30 AM with pain and stiffness and it takes me a minute to figure out the problem. I am a “morning person” and with this regime, I wake up feeling really good.

REPLY
1 reply
mgrogers | @mgrogers | Dec 21, 2021
In reply to @virginiaj "I have the opposite problem. If the prednisone is “wearing off”, I get stiff in the..." + (show)
@virginiaj

I have the opposite problem. If the prednisone is “wearing off”, I get stiff in the shoulders and some pain so have trouble sleeping. Right now I am on 3 mg and take with my supper around 5:30 -6:00. When I was on the bigger doses, I split the dose, taking some in the morning and some at night. It is interesting to me that if I forgot to take even the small dose, I wake up about 2:30 AM with pain and stiffness and it takes me a minute to figure out the problem. I am a “morning person” and with this regime, I wake up feeling really good.

Jump to this post

I take my prednisone in the morning and still have problems sleeping....that's why I'm typing this at 3 a.m!!

REPLY
ncgal | @ncgal | Dec 21, 2021
In reply to @jmcc "Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I..." + (show)
@jmcc

Re: taking your prednisone in the evening, do you have trouble sleeping? My rheumatologist suggested I take it as early as possible in the day because I have had trouble sleeping.

For the past week I’m tapering at 4MG every other day but have pain in my shoulders at night. I’m wondering if I should try shifting my dose to the afternoon or evening. Anyone have thoughts on this?

Jump to this post

I'm now two years with PMR and down to 3-1/4 mgs. Prednisone which I take in the morning with breakfast.. During the day I am doing well and just a slight problem with my knees (I have osteopenia). However, at night I do have pain in my hip and shoulders causing me to keep turning from side to side. However, as soon as I get up the pain is gone. I'm going to taper to 3 mgs next week. I've learned that the more slowly you taper, the chance of having to up the dose is less. The first year I did it too quickly and had to keep upping the dose.

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