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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 20, 2022
In reply to @mikeshell "Thank you.....I typically take my prednisone around 8:30am." + (show)
@mikeshell

Thank you.....I typically take my prednisone around 8:30am.

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Do you know how long you should wait between doses if you were to split the dose?

You can see where I’m going with this. I wonder if you might be able to take the morning dose earlier and thereby the afternoon dose earlier than late afternoon with the objective of not affecting your sleep.

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1 reply
mikeshell | @mikeshell | Jul 20, 2022
In reply to @colleenyoung "Do you know how long you should wait between doses if you were to split the..." + (show)
@colleenyoung

Do you know how long you should wait between doses if you were to split the dose?

You can see where I’m going with this. I wonder if you might be able to take the morning dose earlier and thereby the afternoon dose earlier than late afternoon with the objective of not affecting your sleep.

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Thank you for your suggestion. My routine in the morning without changing and getting up earlier, limits me to taking prednisone no earlier than 8am. Dr suggested, late afternoon for second dose. In my opinion, that is going to effect my ability to sleep, as well as the fact that prednisone should be taken with food, which is difficult as I'm active during the afternoon and do not have access or time for eating. I'm interested if splitting doses actually has shown that it benefits/or results in helping reduce prednisone scheduling plans. Goal is to reduce and eliminate prednisone. Thank you.

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jabrown0407 | @jabrown0407 | Jul 21, 2022
In reply to @mikeshell "I was diagnosed with PMR in April and began taking 20MG of Prednisone daily (in morning)..." + (show)
@mikeshell

I was diagnosed with PMR in April and began taking 20MG of Prednisone daily (in morning) for one month, then instructed to reduce by 2.5mg each week. I am trying to reduce my daily dose, yet unable to get below 15mg without discomfort in the back of my legs, buttocks e.g. sitting is uncomfortable. Prednisone makes me anxious and jittery and somewhat difficultly with sleeping. My doctor has suggested splitting my dose to twice daily i.e. morning 7.5mg and late afternoon 7.5mg for one week, then each week reduce by 2.5mg daily. I am hesitant to proceed as I feel taking prednisone late in the day will affect my ability to sleep as well as I have concerns with managing potential stomach issues using prednisone and the need to take food with dosage (difficult to do when other commitments during the day prohibit interruptions). I also take Pantoprazole in morning to help with stomach issues. I would like to get my dosage lower and more manageable, but wondering if others have had good or bad experiences with splitting daily doses; as well as p.o.v. on best way accomplish a reduction plan that works. Thank you!

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@mikeshell Please follow up with your doctor on Colleen's suggestion to take your doses 6 hours apart or so rather than 8 to 12 hours. I have had PMR for several years and finally started steroids. I had refused them for a long time due to how I knew my body would reach. I am very chemically sensitive. I immediately started having heart rate issues as well as BP. So I dropped the dosage and split it into two doses. I can tolerate it. The pain is still measurable (1-3) but I can cope with the steroid side effects at a lower dose.

I spent a few weeks reducing the time from 10-12 hours to 4-5 hours. Every few days I would move the time between doses a little closer. No one enjoys being controlled by the clock and pills but for me it worked. I used my cell phone and set alarms to remind me. After a while I integrated the schedule into my daily routine.

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gracie2020 | @gracie2020 | Jul 21, 2022
In reply to @skiing "When tapering how much food do you need to take with your prednisone in the morning...." + (show)
@skiing

When tapering how much food do you need to take with your prednisone in the morning. Currently I take it with porridge but sometimes I don’t want to get up that early. Is there something to keep by my bed that I can take at say 5 to 6 am that is easy and enough food to get the job done so I can fall back asleep

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I've had a slice of toast with peanut butter and jelly and that seems to help when I'm not hungry but need to take my meds. I've also had just a protein shake.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 21, 2022
In reply to @gracie2020 "I've had a slice of toast with peanut butter and jelly and that seems to help..." + (show)
@gracie2020

I've had a slice of toast with peanut butter and jelly and that seems to help when I'm not hungry but need to take my meds. I've also had just a protein shake.

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Welcome @gracie2020, Good suggestion. I've taken toast with PB and J when taking my meds including prednisone when my PMR was active. I've also cut off a small piece of a banana when taking meds if I really wasn't hungry.

Is your PMR still active?

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1 reply
gracie2020 | @gracie2020 | Jul 21, 2022
In reply to @johnbishop "Welcome @gracie2020, Good suggestion. I've taken toast with PB and J when taking my meds including..." + (show)
@johnbishop

Welcome @gracie2020, Good suggestion. I've taken toast with PB and J when taking my meds including prednisone when my PMR was active. I've also cut off a small piece of a banana when taking meds if I really wasn't hungry.

Is your PMR still active?

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Yes unfortunately my PMR is still active as I'm going on ten months now with this illness.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jul 21, 2022
In reply to @gracie2020 "Yes unfortunately my PMR is still active as I'm going on ten months now with this..." + (show)
@gracie2020

Yes unfortunately my PMR is still active as I'm going on ten months now with this illness.

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I've had two occurrences. The first lasted 3 and half years and the second 6 years later lasted a year and a half. I made some lifestyle changes with more exercise and eating healthier which I think helped the second time around. My PMR has been in remission since late 2018 and hoping it stays that way.

You might find these two articles helpful:
-- 3 Strategies for Coping with Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr
-- Diet and Supplements for Polymyalgia Rheumatica (PMR): https://www.arthritis-health.com/blog/diet-and-supplements-polymyalgia-rheumatica-pmr

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1 reply
chefj | @chefj | Jul 21, 2022
In reply to @mikeshell "I was diagnosed with PMR in April and began taking 20MG of Prednisone daily (in morning)..." + (show)
@mikeshell

I was diagnosed with PMR in April and began taking 20MG of Prednisone daily (in morning) for one month, then instructed to reduce by 2.5mg each week. I am trying to reduce my daily dose, yet unable to get below 15mg without discomfort in the back of my legs, buttocks e.g. sitting is uncomfortable. Prednisone makes me anxious and jittery and somewhat difficultly with sleeping. My doctor has suggested splitting my dose to twice daily i.e. morning 7.5mg and late afternoon 7.5mg for one week, then each week reduce by 2.5mg daily. I am hesitant to proceed as I feel taking prednisone late in the day will affect my ability to sleep as well as I have concerns with managing potential stomach issues using prednisone and the need to take food with dosage (difficult to do when other commitments during the day prohibit interruptions). I also take Pantoprazole in morning to help with stomach issues. I would like to get my dosage lower and more manageable, but wondering if others have had good or bad experiences with splitting daily doses; as well as p.o.v. on best way accomplish a reduction plan that works. Thank you!

Jump to this post

Hi Mike,
I had similar issues with splitting the dose. First tried to split it when I was taking 20 mg; one does early morning then the second around 3pm. That did disrupt my sleep (which I already have issues with). Then I went to taking the second does with lunch and that made a big difference. Started at 20mg last October, am now very gradually taper down by 1 mg every 3-4 weeks. If I have a bad day, I take an extra mg with lunch. Also was on methotrexate, which helped get my inflammation markers to normal for the first time in years. However, it made me very lightheaded/dizzy. Am no longer taking it and the lightheadedness is slowly getting better. Hope this helps...it takes time to work thru this. Wishing you the best!

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1 reply
mikeshell | @mikeshell | Jul 21, 2022
In reply to @chefj "Hi Mike, I had similar issues with splitting the dose. First tried to split it when..." + (show)
@chefj

Hi Mike,
I had similar issues with splitting the dose. First tried to split it when I was taking 20 mg; one does early morning then the second around 3pm. That did disrupt my sleep (which I already have issues with). Then I went to taking the second does with lunch and that made a big difference. Started at 20mg last October, am now very gradually taper down by 1 mg every 3-4 weeks. If I have a bad day, I take an extra mg with lunch. Also was on methotrexate, which helped get my inflammation markers to normal for the first time in years. However, it made me very lightheaded/dizzy. Am no longer taking it and the lightheadedness is slowly getting better. Hope this helps...it takes time to work thru this. Wishing you the best!

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Thank you! This is very helpful. Much appreciated!

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munchie | @munchie | Jul 21, 2022
In reply to @kmeikle1 "What you are experiencing is not normal. It saddens me to read the replies and how..." + (show)
@kmeikle1

What you are experiencing is not normal. It saddens me to read the replies and how this disease is being treated by doctors/rheumys. Big picture: according to Mayo Clinic, the average duration of PMR is 5.9 years and the only treatment is prednisone. We try to taper to find the lowest dose where we are mostly comfortable. We shouldn't reduce prednisone if we are experiencing pain. So for example, I found complete relief with my initial dose of 15 mgs. (some people need more). When I dropped to 12.5 I felt some pain, but not enough to increase. I've struggled trying to get below 10 mgs. for several years now and I still take 11-12 mgs. daily. Do I want to take less? Yes, but I don't get to determine my taper. My body does. If you take less prednisone than your body needs to deal with the inflammation, the inflammation continues to build and you'll have a flare. My hope is that you'll find a rheumatologist who will help you figure out what's best for your body and not follow the limited and sometimes errant medical literature.

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very sound advice

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