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

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.

I’m Ethan, and I’m the moderator of this group. You’ll most likely be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

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?

@johnbishop

Hello @phoenix0509, I see this is your first post and would like to thank you for sharing your PMR experience and welcome you to Mayo Clinic Connect. It really is a great place to learn together by sharing your experiences and learning from the experience of other members. My PMR seemed to be worse in the morning both times when it was active. Then once I was awake and able to move a little that seemed to help (along with the prednisone ☺) with the pain. Most of my pain from PMR was also in the shoulders, arms, hands and the lower back. The key for me was starting at 20 mg dose which took care of almost all the pain and then start tapering off as I was able to do with a minimum amount of pain. Each of us are different and I think that's a big struggle learning how much pain you can deal with when tapering off of prednisone.

Are you able to ask your doctor about splitting your dosage between morning and evening, or maybe adding the 5 mg dosage increase he suggested in the evening? I think that some members have mentioned it helped them to split the dosage. I started both my occurrences of PMR at 20 mg which I think is a fairly common starting point.

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Hello @johnbishop , an Update, interesting that I am now at day 13 of prednisone, 10mg/day x 10 days, then increased to 15mg/day for the last 3 days. I see only about a 40% decrease in symptoms. Its still early in the treatment of PMR. My symptoms are more bilateral arm pain/tingling and hip/leg bilateral tingling. arm pain > hip/leg pain. My MD elected a lower starting dose to help reduce the chance of a pseudoarthrosis at L5-S1 (TLIF November 2019). I am splitting my 15mg/day dose to 10mg/am and 5mg in pm. I am able to sleep longer at night (2 to 4 hrs) but still awake multiple times in pain. best David

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@johnbishop

Hello @mbm, welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. You mentioned being at 15mg down from 20mg. Did your rheumatologist suggest a tapering schedule? Are you pain free at 15mg?

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Hi,

I am not completely pain free, I just went to 15mg on January 12th. He has set another appointment for March and he would like me to be down to 10mg by then if possible.

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@mbm

Hi,

I am not completely pain free, I just went to 15mg on January 12th. He has set another appointment for March and he would like me to be down to 10mg by then if possible.

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@mbm and @phoenix0509, my rheumatologist explained to me that PMR affects people differently. The goal is to get the person off of prednisone as soon as possible when they able to taper off with little to no pain. I struggled with my first occurrence of PMR and it took me 3 years to taper off. That's when the rheumatologist told me about another one of his patients that had been on 1mg of prednisone for a year before being able to taper off. The last six months I went back and forth between 1mg and 1/2mg before being able to stop taking prednisone without having the pain return. What helped me was keeping a daily log of my pain level (arbitrary 0 to 10 of how I felt) and dosage. That allowed me to look back and determine how fast I could taper off. It really helped when the PMR returned after 6 years of being in remission. The second time I was able to taper off in 1-1/2 years.

Good luck on your tapering! Hoping for a pain free day for all of my PMR friends.

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@johnbishop

@mbm and @phoenix0509, my rheumatologist explained to me that PMR affects people differently. The goal is to get the person off of prednisone as soon as possible when they able to taper off with little to no pain. I struggled with my first occurrence of PMR and it took me 3 years to taper off. That's when the rheumatologist told me about another one of his patients that had been on 1mg of prednisone for a year before being able to taper off. The last six months I went back and forth between 1mg and 1/2mg before being able to stop taking prednisone without having the pain return. What helped me was keeping a daily log of my pain level (arbitrary 0 to 10 of how I felt) and dosage. That allowed me to look back and determine how fast I could taper off. It really helped when the PMR returned after 6 years of being in remission. The second time I was able to taper off in 1-1/2 years.

Good luck on your tapering! Hoping for a pain free day for all of my PMR friends.

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Hi,

I am taking 10mg in the morning and 5mg at night. He wants me to slowing get rid of the 5 mg.
Hoping to be off prednisone if at all possible. Glad to hear you are in remission.

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@johnbishop

Hello @mbm, welcome to Mayo Clinic Connect. I also have PMR but it is currently in remission. You mentioned being at 15mg down from 20mg. Did your rheumatologist suggest a tapering schedule? Are you pain free at 15mg?

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I am not completely pain free at 15mg, can feel it a bit in the morning when I wake up.
I take 10mg in the morning and 5mg at night. He wants me to slowly taper off the 5mg.
I have another appointment in March and he said we will discuss tapering further at that point.

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Diagnosed with PMR in March 2019 but mild symptoms had been ongoing for several years. Extreme pain in arms, shoulders, and neck began suddenly in January of 2019. Currently on 6 mg prednisone. Maija

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@maija

Diagnosed with PMR in March 2019 but mild symptoms had been ongoing for several years. Extreme pain in arms, shoulders, and neck began suddenly in January of 2019. Currently on 6 mg prednisone. Maija

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Hi @maija, welcome to Mayo Clinic Connect. You mentioned you recently started having extreme pain in arms, shoulders and neck and that you are currently on 6 mg prednisone. It sounds like the current dosage of prednisone is not helping with the PMR unless you have something else going on. Have you discussed the recent pain symptoms with your rheumatologist or doctor?

My PMR is in remission but with both occurrences when the PMR was active I was started on 20 mg of prednisone and tapered off from there. First time took me 3 years to taper off. Second time took me 1-1/2 years to taper off. I still live with some minor aches and pains which may be part of the PMR.

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@johnbishop

Hi @maija, welcome to Mayo Clinic Connect. You mentioned you recently started having extreme pain in arms, shoulders and neck and that you are currently on 6 mg prednisone. It sounds like the current dosage of prednisone is not helping with the PMR unless you have something else going on. Have you discussed the recent pain symptoms with your rheumatologist or doctor?

My PMR is in remission but with both occurrences when the PMR was active I was started on 20 mg of prednisone and tapered off from there. First time took me 3 years to taper off. Second time took me 1-1/2 years to taper off. I still live with some minor aches and pains which may be part of the PMR.

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Sorry for the misunderstanding — pain began one year ago in January 2019. I have tapered down to 6 mg of prednisone and am free of pain: lingering stiffness occurs on and off. Attempted to decrease to 5 mg 3 weeks ago – symptoms began to reoccur. Dr had me return to
6 mg dosage and I have improved. Are you familiar with the "dead slow and nearly stop" taper schedule? Introduced by a Swedish gentleman on a UK Health Unblocked discussion group.

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@maija

Sorry for the misunderstanding — pain began one year ago in January 2019. I have tapered down to 6 mg of prednisone and am free of pain: lingering stiffness occurs on and off. Attempted to decrease to 5 mg 3 weeks ago – symptoms began to reoccur. Dr had me return to
6 mg dosage and I have improved. Are you familiar with the "dead slow and nearly stop" taper schedule? Introduced by a Swedish gentleman on a UK Health Unblocked discussion group.

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Hi @maija, Thanks for the reference. I was not familiar with the dead slow and nearly stop taper schedule as described on the site you referenced here: https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan. It's pretty close to how I was able to taper off of prednisone for my first occurrence of PMR. My rheumatologist helped me by suggesting I keep a daily log of my dosage and pain scale (0 to 10). The first time with PMR that took 3 years to taper off, I was going between 1 mg and 1/2 mg for the last six months until I was finally able to taper off. I mostly used a taper every week schedule towards the end. When I first started the prednisone I tried tapering every 3 to 4 days but was not too successful. I think the key is that we are all affected a little differently and the tapering can be subjective depending on how we feel and how much pain is acceptable. Biggest help for me was having a good supply of 1 mg tablets and a good pill splitter ☺

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@johnbishop

Hi @maija, Thanks for the reference. I was not familiar with the dead slow and nearly stop taper schedule as described on the site you referenced here: https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan. It's pretty close to how I was able to taper off of prednisone for my first occurrence of PMR. My rheumatologist helped me by suggesting I keep a daily log of my dosage and pain scale (0 to 10). The first time with PMR that took 3 years to taper off, I was going between 1 mg and 1/2 mg for the last six months until I was finally able to taper off. I mostly used a taper every week schedule towards the end. When I first started the prednisone I tried tapering every 3 to 4 days but was not too successful. I think the key is that we are all affected a little differently and the tapering can be subjective depending on how we feel and how much pain is acceptable. Biggest help for me was having a good supply of 1 mg tablets and a good pill splitter ☺

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Thanks for your reply. Very interesting how slowly you tapered off towards the end. From 60 mg (visual issue- neg GCI biopsy) for one
week, 40 for another week and 20 mg for 4 weeks: then the gradual taper. Twice I did return to a prior dosage for another 2 weeks. For
the most part I do well, and am usually feeling my best in the afternoon beginning at 3 to 4 PM. I have not experienced any of the "bad"
side effects of Prednisone except for the "chubby cheeks" which are becoming less chubby. I am 83 years old and have some difficulty
with balance while walking. Not a big issue on level walkways that are free of ice.
Thank you for the service you are performing: I am SO pleased that I found this site.

Maija

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Thank you thank you thank you for creating this group! I feel a little less crazy knowing that I didn't just imagine there was such a thing as PMR. And I desperately need some help from the group: I can't find a doctor/nurse practitioner will even LOOK at PMR as a possibility even though I present every single symptom associated with it–and GCA. Doctors here in Tallahassee have messed me about for a year with the symptoms, mostly shuffling me off to a NP who listened, nodded, and diagnosed me with "Hm.", took my money and showed me the door. It's even to the point where I went to ER with a TIA (diagnosed after screening me for a stroke), and when I reported back to my doctor? "Hm."

My wife and I googled the list of my symptoms and PMR turned up IMMEDIATELY. When I followed the Mayo website's advice and typed out my symptoms along with the Mayo article on PMR, the nurse practitioner was livid, refused to even make eye contact with the words on the page, and proceeded to show me the door, assuring me that I needed blood tests to confirm I had "food allergies" (???)

I need help finding a way to talk to a doctor or find a doctor that has heard of this so that they'll listen to me and get this taken care of. Help!

I'm being referred to UF Shands (in-network provider), and they've already fumbled the diagnosis, now telling me thy're going to schedule me with an orthopedist for "random leg pain" (???)–who then may or may not refer me back to a rheumatologist. In the meantime, I'm dragging myself out of bed barely able to walk most days till mid-afternoon, and when I teach classes, I have to lecture using a cane. It's like I'm 61 going on 95. And every medical person I've talked to says they've never heard of PMR (and was told to "stop reading things on the internet", since clearly Mayo Clinic is "fake news" 🙂

Help!

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@ronhonn

Thank you thank you thank you for creating this group! I feel a little less crazy knowing that I didn't just imagine there was such a thing as PMR. And I desperately need some help from the group: I can't find a doctor/nurse practitioner will even LOOK at PMR as a possibility even though I present every single symptom associated with it–and GCA. Doctors here in Tallahassee have messed me about for a year with the symptoms, mostly shuffling me off to a NP who listened, nodded, and diagnosed me with "Hm.", took my money and showed me the door. It's even to the point where I went to ER with a TIA (diagnosed after screening me for a stroke), and when I reported back to my doctor? "Hm."

My wife and I googled the list of my symptoms and PMR turned up IMMEDIATELY. When I followed the Mayo website's advice and typed out my symptoms along with the Mayo article on PMR, the nurse practitioner was livid, refused to even make eye contact with the words on the page, and proceeded to show me the door, assuring me that I needed blood tests to confirm I had "food allergies" (???)

I need help finding a way to talk to a doctor or find a doctor that has heard of this so that they'll listen to me and get this taken care of. Help!

I'm being referred to UF Shands (in-network provider), and they've already fumbled the diagnosis, now telling me thy're going to schedule me with an orthopedist for "random leg pain" (???)–who then may or may not refer me back to a rheumatologist. In the meantime, I'm dragging myself out of bed barely able to walk most days till mid-afternoon, and when I teach classes, I have to lecture using a cane. It's like I'm 61 going on 95. And every medical person I've talked to says they've never heard of PMR (and was told to "stop reading things on the internet", since clearly Mayo Clinic is "fake news" 🙂

Help!

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Hello @ronhonn, Welcome to Mayo Clinic Connect. I know it can be frustrating not getting the help you need. Have you thought about getting a second opinion from a major teaching hospital or Mayo Clinic? I was diagnosed and helped by a Mayo Clinic rheumatologist who described PMR in layman's terms to me as arthritis all over the body.

Here's what Mayo Clinic has to say about PMR:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539.
If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Hello @ronhonn, Have you considered going outside of your network and getting blood work done at an independent lab? It must be extremely frustrating for you to be in pain and left without benefit of a medical advocate. Good luck.

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@johnbishop

Hello @ronhonn, Welcome to Mayo Clinic Connect. I know it can be frustrating not getting the help you need. Have you thought about getting a second opinion from a major teaching hospital or Mayo Clinic? I was diagnosed and helped by a Mayo Clinic rheumatologist who described PMR in layman's terms to me as arthritis all over the body.

Here's what Mayo Clinic has to say about PMR:
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/symptoms-causes/syc-20376539.
If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

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Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the phone with my insurance and doctors, including speaking to Mayo here in Florida. I was told that I can't get a referral to Mayo because my GP has never heard of PMR and doesn't think it's a thing. I talked to Mayo, 'said I was willing to pay out of pocket and they told me I'd need a $5000 deposit. When I said I'd raise the cash to just pay out of pocket before I become permanently disabled, the they said "Oooh! Right. Yeah we can't actually take you either unless you have a referral." This. Is. Insane.

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@ronhonn

Hi, John. Boy, this just gets worse and worse. 'Spent the last 3 hours on the phone with my insurance and doctors, including speaking to Mayo here in Florida. I was told that I can't get a referral to Mayo because my GP has never heard of PMR and doesn't think it's a thing. I talked to Mayo, 'said I was willing to pay out of pocket and they told me I'd need a $5000 deposit. When I said I'd raise the cash to just pay out of pocket before I become permanently disabled, the they said "Oooh! Right. Yeah we can't actually take you either unless you have a referral." This. Is. Insane.

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@ronhonn that is frustrating to say the least. I would encourage you to call the Office of Patient Experience at Mayo Clinic.

Office of Patient Experience
8 a.m. to 5 p.m., Monday – Friday
507-284-4988

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