1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

Jeff Down Under | @legendts | Jun 25, 2021
In reply to @johnbishop "Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and..." + (show)
@johnbishop

Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and others. The goal of tapering in the words of my rheumatologist (as I remember 🙂), is to taper off as soon as you are able to do it with little or no pain symptoms from your PMR. The rheumatologist normally will recommend a tapering schedule but it can be different for each of us due to the pain. Mine recommended that I keep a daily log and record my dosage and my pain on a scale of 1 to 10. I started with a monthly taper but within a few months I changed to every 2 weeks, then at the lower doses tried to taper weekly but sometimes had to go back up to the previous dose. I think the key is to listen to your body. For me if my pain scale was 1 or 2 I would taper to the next lower dose. If my pain went up on the scale, I stayed the course for a couple of days to see if it would get better. If it didn't get better I went back to the previous dose.

Another thing that will help is to have your doctor write a prescription for 1 mg and 2.5 mg tablets. They make it a lot easier to taper slower with a smaller drop in dosage. My first round with PMR took me 3-1/2 years to go from 20 mg to off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg (split a 1 mg tablet) until I could finally stop taking the prednisone with little to no aches and pains.

You might want to write down all your questions to prepare for your appointment with the rheumatologist. There is a website with some tools to help you plan your conversation with your doctor. It has some cards you can print out to plan your conversation - https://patientrevolution.org/visit-tools

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Good advice as always John.

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floridabonnie | @floridabonnie | Jun 27, 2021
In reply to @johnbishop "Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and..." + (show)
@johnbishop

Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and others. The goal of tapering in the words of my rheumatologist (as I remember 🙂), is to taper off as soon as you are able to do it with little or no pain symptoms from your PMR. The rheumatologist normally will recommend a tapering schedule but it can be different for each of us due to the pain. Mine recommended that I keep a daily log and record my dosage and my pain on a scale of 1 to 10. I started with a monthly taper but within a few months I changed to every 2 weeks, then at the lower doses tried to taper weekly but sometimes had to go back up to the previous dose. I think the key is to listen to your body. For me if my pain scale was 1 or 2 I would taper to the next lower dose. If my pain went up on the scale, I stayed the course for a couple of days to see if it would get better. If it didn't get better I went back to the previous dose.

Another thing that will help is to have your doctor write a prescription for 1 mg and 2.5 mg tablets. They make it a lot easier to taper slower with a smaller drop in dosage. My first round with PMR took me 3-1/2 years to go from 20 mg to off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg (split a 1 mg tablet) until I could finally stop taking the prednisone with little to no aches and pains.

You might want to write down all your questions to prepare for your appointment with the rheumatologist. There is a website with some tools to help you plan your conversation with your doctor. It has some cards you can print out to plan your conversation - https://patientrevolution.org/visit-tools

Jump to this post

Thank you, that was a lot of help. He has me scheduled for appointments every 6 weeks or so, and on my last visit, he just said we want to get to the lowest dose possible and go from there, but didn't tell me how to do this. So I have been slowly cutting back and if the pain stays away, I wait a week or so and cut another pill in half and try that. Your suggestion of having lower doses on hand sounds awesome. I will call his office and see if I can get some smaller doses. What is the typical maintenance dose? He said I may have to take a low dose for a year or more, but he didn't say how low.

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1 reply
scpartain | @scpartain | Jun 28, 2021
In reply to @floridabonnie "Thank you, that was a lot of help. He has me scheduled for appointments every 6..." + (show)
@floridabonnie

Thank you, that was a lot of help. He has me scheduled for appointments every 6 weeks or so, and on my last visit, he just said we want to get to the lowest dose possible and go from there, but didn't tell me how to do this. So I have been slowly cutting back and if the pain stays away, I wait a week or so and cut another pill in half and try that. Your suggestion of having lower doses on hand sounds awesome. I will call his office and see if I can get some smaller doses. What is the typical maintenance dose? He said I may have to take a low dose for a year or more, but he didn't say how low.

Jump to this post

My rheumatologist gave me a schedule for tapering. He advised tapering every two weeks by 2.5 mg. I started at 15 mg. and went to 12.5 after two weeks, then 10mg. after another two weeks. I am now taking 7.5 mg. and expect to go down to 5 mg. soon. This schedule involves splitting a 5 mg. tablet into two pieces for the 2.5 mgs. He advised getting labs again when I reach the 5 mg. level and he will decide what to do from there. I am 75 and this is my second bout of PMR. I first experienced PMR thirteen years ago when it lasted for six months before going into remission. I am now five months into this second flare-up of PMR and the pain is gradually subsiding even though I am cutting back on the prednisone. I hope this is helpful to others who are experiencing PMR.

REPLY
kimmgb | @kimmgb | Jun 28, 2021
In reply to @johnbishop "Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and..." + (show)
@johnbishop

Hello @floridabonnie, I would like to add my welcome to Connect along with @colleenyoung, @legendts and others. The goal of tapering in the words of my rheumatologist (as I remember 🙂), is to taper off as soon as you are able to do it with little or no pain symptoms from your PMR. The rheumatologist normally will recommend a tapering schedule but it can be different for each of us due to the pain. Mine recommended that I keep a daily log and record my dosage and my pain on a scale of 1 to 10. I started with a monthly taper but within a few months I changed to every 2 weeks, then at the lower doses tried to taper weekly but sometimes had to go back up to the previous dose. I think the key is to listen to your body. For me if my pain scale was 1 or 2 I would taper to the next lower dose. If my pain went up on the scale, I stayed the course for a couple of days to see if it would get better. If it didn't get better I went back to the previous dose.

Another thing that will help is to have your doctor write a prescription for 1 mg and 2.5 mg tablets. They make it a lot easier to taper slower with a smaller drop in dosage. My first round with PMR took me 3-1/2 years to go from 20 mg to off of prednisone with the last 6 months going back and forth between 1 mg and 1/2 mg (split a 1 mg tablet) until I could finally stop taking the prednisone with little to no aches and pains.

You might want to write down all your questions to prepare for your appointment with the rheumatologist. There is a website with some tools to help you plan your conversation with your doctor. It has some cards you can print out to plan your conversation - https://patientrevolution.org/visit-tools

Jump to this post

Hi, I have tried lowering my prednisone. I was able to go down to 7mg a day but the pain came back two days later. I. Went back up to 8 mg a day for a week, then tried to go down again to 7. Same thing happened. The pain increased and I had to increase to the point I am on 10 Mg a day. I split my dose because if I don’t , I can’t make it through the night. I see my doctor tomorrow and he wants to put me on methotrexate. I am afraid to take it for many reasons. I know prednisone is bad for you and they say it is hard to get off. I have been on it for about 10 months. Any help on what to do would be appreciated! Thank you.

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daylily | @daylily | Jun 28, 2021

I had started a Statin drug the day before this horrific pain began all over my body. Mostly my pelvic, shoulder and neck areas. I was also going through a very stressful time of moving my father and selling his house. The pain continued and I stopped the Statin within the month. There was no “recovery.” A few months later my FP doc diagnosed me with PMR. I followed with a rheumatologist and began 15mg Prednisone with tapering 1mg/month. I had almost immediate, complete pain relief. I have tapered pretty successfully and am down to 3mg/day. I had one 1mg bump-up around 6/7mg/day. I have always been super active (walking, hiking, biking, snow shoeing). I thoroughly enjoy these activities. I am not over weight. I am a 64 year old female. I have three questions at the moment. Can you over exercise with PMR? When lowering the dosage, is it common to have a slight rebound of symptoms for a time. In other words, how long should you wait after decrease before you bump the Prednisone back up? And, thirdly, why isn’t there a 1/2mg Prednisone pill?

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jcaffrey47 | @jcaffrey47 | Jun 28, 2021
In reply to @legendts "Good luck with your tapering. You are doing it much quicker than I am as I..." + (show)
@legendts

Good luck with your tapering. You are doing it much quicker than I am as I was diagnosed in January 21 and am on 8mg at the moment. My tapering is 1mg every five weeks and using the Mayo suggested schedule. If what you are doing is working for you then that’s great. Take care.

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What is the Mayo tapering schedule and where to find?

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1 reply
jcaffrey47 | @jcaffrey47 | Jun 28, 2021

Hello everyone!
I was diagnosed with PMR on June 1 and had already started on a prednisone series which worked great until it tapered down to 10MG and I was in misery. My primary kept me at 20 and I have tapered at his advice to 15mg but I am confused as to when, why and how to taper more. I actually am unusual in that I have little pain compared to other stories I read. Yes, one shoulder and lower left back do hurt but the pain rarely exceeds level 3. My main complaint is racking nausea and a tingling sensation in my feet and sometimes in my fingers. Since the nausea could be from either or both the PMR and the prednisone do I taper or does the amount of nausea NOT dictate the speed of the taper? What to do about the tingling? How to treat this nausea? I would also be interested in hearing about when and why patients started on methotrexate and what percentage enjoyed relief and was that relief in a reduction in the prednisone dose or was it independent of simply lowering the prednisone? One final question and that is to what extent do other patients supplement the Prednisone with Tylenol and how much and when? Thanks in advance for any words of wisdom.

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1 reply
Jeff Down Under | @legendts | Jun 29, 2021
In reply to @jcaffrey47 "What is the Mayo tapering schedule and where to find?" + (show)
@jcaffrey47

What is the Mayo tapering schedule and where to find?

Jump to this post

I’ve been looking for that information but having trouble finding it. Basically it was dropping by 1mg every four to six weeks from 10mg. I went in the middle and am doing it every five weeks. I started at 20mg for three weeks, 15mg for three weeks then 12.5mg for three weeks before going to 10mg for five weeks. I’ll keep looking and if I can find it I’ll add it for you. There were some other related links all of them were in this thread somewhere.

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1 reply
Jeff Down Under | @legendts | Jun 29, 2021
In reply to @legendts "I’ve been looking for that information but having trouble finding it. Basically it was dropping by..." + (show)
@legendts

I’ve been looking for that information but having trouble finding it. Basically it was dropping by 1mg every four to six weeks from 10mg. I went in the middle and am doing it every five weeks. I started at 20mg for three weeks, 15mg for three weeks then 12.5mg for three weeks before going to 10mg for five weeks. I’ll keep looking and if I can find it I’ll add it for you. There were some other related links all of them were in this thread somewhere.

Jump to this post

@jcaffrey47 Found some worthwhile reading here.
https://www.medpagetoday.org/rheumatology/generalrheumatology/66912
And here.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

Have a read of page 25 in this thread and others before and after that may help.

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lizzier | @lizzier | Jun 30, 2021

I don't use any OTC meds. I do believe that I read someplace not to use them with prednisone, but if you are confused about how to taper, or using OTC drugs I would suggest a consultation with your doc rather than tapering on your own. I just don't see prednisone as a do it yourself med unless you are way down and tapering successfully at the low end and with instruction from your doc on how to do it. Mine will say stay at 8 mg. then on the first of next month go down 1 mg., etc.. You are fortunate to not have a lot of pain. If only..... But you do have a ways to go. Even if you don't want to do a consultation, perhaps a call to his nurse. She'll check with your doc and tell you the next step. This is a med I would not fool around with. Also wondering about the nausea. I did have the hand and foot tingling, but it seems to have ceased for now. My wake up call is he Charlie Horse. Those are really fun. You can jump right out of bed in the middle of the night full force.

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