Polymyalgia rheumatica

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can’t take pain meds, but do drink wine to ease pain, although I’m told no alcohol w prednisone. Anything you can share as far as info

@ambershe

I was diagnosed with PMR Nov 2017 and am 52 yrs old. I started at 20mg of prednisone and the pain magically went away within a day and the amazing energy I had was incredible. I am now tapering off or trying too. I have reduced the medication down to 4.5mg however at that dose the pain came back not as bad as not being on anything, however I am wakened in the night with throbbing knee pain. The elbow and shoulder pain too is starting to come back. I recently seen the specialist and he suggested I go back up to 6mg which I have just done. Now how do I lower to get off of the prednisone, I was tapering every 2 weeks, is that too often? Also I had a blood test and the White blood count was high, is that due the to the PMR or prednisone? Does anyone know why we get this PMR is it due to stress? thanks for your input

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Hi:I am a 53 year old female , diagnosed with PMR when I was 51. We are both very young to have PMR from what they tell me. Stress can play a part in PMR, but I think genetics and environment are equally blamed. I have been tapering for the last two years on prednisone. Be very cautious to not come down too fast. It can really set you back on progress. I hope you have better luck with all of this than I have. It has been a tough 2 years but from what the doctors tell mew I have a very stubborn case of PMR.

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@johnbishop

Hi @sammiesarah, welcome to Connect. My PMR is currently in remission and I've had 2 occurrences of PMR. The first one lasted 3 years and I felt a little like you although your's is definitely worse than what mine was. A 20 mg dosage of prednisone made my pain go away but I struggled tapering down and if I did it too quickly it reared it's ugly head back up and the pain was bad.

What type of tapering schedule were you using? I worked closely using recommendations by my Mayo rheumatologist who told me about one of his patients that took 1/2 mg for a year going back and forth every few weeks from 1/2 mg to zero until he was able to stop taking it with minimal pain. For me, I had to go between 1/2 mg and 1 mg for about six months before I was able to taper off of prednisone.

Diet may also play a part in helping with PMR. Here's some information about it. I now try to stay away from most if not all processed foods. I still have my days though ☺

What to eat if you have polymyalgia rheumatica
https://www.medicalnewstoday.com/articles/321683.php

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Thanks for your reply. I am currently on 20MG of prednisone for two weeks then I am to drop to 15 for two weeks then 10 for two weeks and then hopefully I can get back down to 5mg ( where I was before this last flare up). The prednisone taper is pretty fast but that is because the doctor feels I can't stay up so high. She is hoping the Orencia kicks in and will offset the prednisone dosage. At one point a few months ago I did get down to 3 MG but I can honestly say that was probably too low. I think I may have set the flare up off with that low dosage. I just have a very hard time taking all this medicine. I feel I can out will it and be stronger than the disease but frankly I think I am losing that battle.

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@johnbishop

Hi @anniegal, Did the prednisone get rid of the pain? Here is some information I found that may help with your question of diagnosis of polymyalgia rheumatica (PMR).

Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: a four-point guidance: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5911650/

You mentioned that the prednisone works for the pain and you are now at 11 mg dosage. Did you start at 20 mg? I've had 2 occurrences of PMR. Both were treated starting with a 20 mg dosage but everyone is a affected a little differently by prednisone and PMR.

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Thank you for the article. l have had undiagnosed PMR for two decades +. I was in a very bad mva and received R 131 for Graves Disease the same day, my first auto immune disease. l had excrutiating cervical, lumbar, shoulder and hip pain and headaches. Mornings were the worst. I am sure the trauma of the car accident combined with the radiation triggered the PMR. Countless doctors and no one caught this. I was told I had fibromyalgia. Eventually I learned from a neurologist at Stanford that l had had a brain injury in the car accident. The orthopedic damage and torn rotor cuffs made it hard for doctors to dx. l was told I had a central pain syndrome. About six years ago l was assessed at Stanford which led to me declining a recommendation for a spinal fusion and my relying on a very caring pain doctor. Botox injections were added for the almost daily migraines. Rescue shoulder injections of cortisone every six months and laser ablation proceduree for my neck and lower back. Oral opiates and NSAIDS. Despite all this, the pain was ever present.

I suggested PMR to my primary practice. I was told since my SED rate and C Reactive protein were normal, it could not be PMR. I finally insisted on a referral to an excellent rheumatologist in San Francisco earlier this month and he immediately dx’ed me with PMR.

l feel like I have gotten out of jail. l was started on 20 mg in Feb and quickly told to reduce by my primary who was very skeptical that it was PMR. l am now at 11 mg. Will try 10 by April. I am also looking for a new primary practioner.

l am 73. l was 48 when this all started. I think many cases of PMR are missed and confused with other conditions. I am now able to walk, get out of a chair, put on shoes that tie, use a recumbent bike and have pain free mornings. l am following a gluten and sugar free Paleo diet. l have not gained any weight since going on the prednisone but acquired 50 pounds over the last 25 years from inability to exercise so I am hoping to lose that. l have Sicca syndrome ( again normal labs) which l was told I could not have as well.

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@anniegal

Thank you for the article. l have had undiagnosed PMR for two decades +. I was in a very bad mva and received R 131 for Graves Disease the same day, my first auto immune disease. l had excrutiating cervical, lumbar, shoulder and hip pain and headaches. Mornings were the worst. I am sure the trauma of the car accident combined with the radiation triggered the PMR. Countless doctors and no one caught this. I was told I had fibromyalgia. Eventually I learned from a neurologist at Stanford that l had had a brain injury in the car accident. The orthopedic damage and torn rotor cuffs made it hard for doctors to dx. l was told I had a central pain syndrome. About six years ago l was assessed at Stanford which led to me declining a recommendation for a spinal fusion and my relying on a very caring pain doctor. Botox injections were added for the almost daily migraines. Rescue shoulder injections of cortisone every six months and laser ablation proceduree for my neck and lower back. Oral opiates and NSAIDS. Despite all this, the pain was ever present.

I suggested PMR to my primary practice. I was told since my SED rate and C Reactive protein were normal, it could not be PMR. I finally insisted on a referral to an excellent rheumatologist in San Francisco earlier this month and he immediately dx’ed me with PMR.

l feel like I have gotten out of jail. l was started on 20 mg in Feb and quickly told to reduce by my primary who was very skeptical that it was PMR. l am now at 11 mg. Will try 10 by April. I am also looking for a new primary practioner.

l am 73. l was 48 when this all started. I think many cases of PMR are missed and confused with other conditions. I am now able to walk, get out of a chair, put on shoes that tie, use a recumbent bike and have pain free mornings. l am following a gluten and sugar free Paleo diet. l have not gained any weight since going on the prednisone but acquired 50 pounds over the last 25 years from inability to exercise so I am hoping to lose that. l have Sicca syndrome ( again normal labs) which l was told I could not have as well.

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@anniegal, that is really good news. It's great to advocate for your health and I think it has to play a bigger part in the future of healthcare. There is another discussion on Connect you might find helpful.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@anniegal

Thank you for the article. l have had undiagnosed PMR for two decades +. I was in a very bad mva and received R 131 for Graves Disease the same day, my first auto immune disease. l had excrutiating cervical, lumbar, shoulder and hip pain and headaches. Mornings were the worst. I am sure the trauma of the car accident combined with the radiation triggered the PMR. Countless doctors and no one caught this. I was told I had fibromyalgia. Eventually I learned from a neurologist at Stanford that l had had a brain injury in the car accident. The orthopedic damage and torn rotor cuffs made it hard for doctors to dx. l was told I had a central pain syndrome. About six years ago l was assessed at Stanford which led to me declining a recommendation for a spinal fusion and my relying on a very caring pain doctor. Botox injections were added for the almost daily migraines. Rescue shoulder injections of cortisone every six months and laser ablation proceduree for my neck and lower back. Oral opiates and NSAIDS. Despite all this, the pain was ever present.

I suggested PMR to my primary practice. I was told since my SED rate and C Reactive protein were normal, it could not be PMR. I finally insisted on a referral to an excellent rheumatologist in San Francisco earlier this month and he immediately dx’ed me with PMR.

l feel like I have gotten out of jail. l was started on 20 mg in Feb and quickly told to reduce by my primary who was very skeptical that it was PMR. l am now at 11 mg. Will try 10 by April. I am also looking for a new primary practioner.

l am 73. l was 48 when this all started. I think many cases of PMR are missed and confused with other conditions. I am now able to walk, get out of a chair, put on shoes that tie, use a recumbent bike and have pain free mornings. l am following a gluten and sugar free Paleo diet. l have not gained any weight since going on the prednisone but acquired 50 pounds over the last 25 years from inability to exercise so I am hoping to lose that. l have Sicca syndrome ( again normal labs) which l was told I could not have as well.

Jump to this post

@anniegal – thanks for sharing your story. Do you have tinnitus as part of your symptoms? With the exception of the hip pain, our systems are pretty much the same.

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@anniegal

Thank you for the article. l have had undiagnosed PMR for two decades +. I was in a very bad mva and received R 131 for Graves Disease the same day, my first auto immune disease. l had excrutiating cervical, lumbar, shoulder and hip pain and headaches. Mornings were the worst. I am sure the trauma of the car accident combined with the radiation triggered the PMR. Countless doctors and no one caught this. I was told I had fibromyalgia. Eventually I learned from a neurologist at Stanford that l had had a brain injury in the car accident. The orthopedic damage and torn rotor cuffs made it hard for doctors to dx. l was told I had a central pain syndrome. About six years ago l was assessed at Stanford which led to me declining a recommendation for a spinal fusion and my relying on a very caring pain doctor. Botox injections were added for the almost daily migraines. Rescue shoulder injections of cortisone every six months and laser ablation proceduree for my neck and lower back. Oral opiates and NSAIDS. Despite all this, the pain was ever present.

I suggested PMR to my primary practice. I was told since my SED rate and C Reactive protein were normal, it could not be PMR. I finally insisted on a referral to an excellent rheumatologist in San Francisco earlier this month and he immediately dx’ed me with PMR.

l feel like I have gotten out of jail. l was started on 20 mg in Feb and quickly told to reduce by my primary who was very skeptical that it was PMR. l am now at 11 mg. Will try 10 by April. I am also looking for a new primary practioner.

l am 73. l was 48 when this all started. I think many cases of PMR are missed and confused with other conditions. I am now able to walk, get out of a chair, put on shoes that tie, use a recumbent bike and have pain free mornings. l am following a gluten and sugar free Paleo diet. l have not gained any weight since going on the prednisone but acquired 50 pounds over the last 25 years from inability to exercise so I am hoping to lose that. l have Sicca syndrome ( again normal labs) which l was told I could not have as well.

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@anniegal This maybe my case as my CRP sed rate where high when first diagnosed with PMR but then they where normal and no one believed me so in May have appt. with new rheumatologist and talk with him

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Hi. This is my first message on Mayo Clinic Connect, but I've been around for awhile, reading. I need to speak up on this topic of CRP and ESR (Sed Rate) because it can delay proper diagnosis. I encountered this personally and was denied Plaquenil for years despite long term Sjogren's Syndrome — over forty years.
Somehow, a bunch of rheumatologists got the false idea that it is necessary for patients to demonstrate inflammation by having elevated markers. This is just not so, and has been proven many times. Patient surveys and academic studies show that it "just ain't so." I went through 30 years of paper and electronic medical records of metabolic tests and, no matter what I was going through at the time I have NEVER had an inflammatory marker over the normal range.

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@redhen

Hi. This is my first message on Mayo Clinic Connect, but I've been around for awhile, reading. I need to speak up on this topic of CRP and ESR (Sed Rate) because it can delay proper diagnosis. I encountered this personally and was denied Plaquenil for years despite long term Sjogren's Syndrome — over forty years.
Somehow, a bunch of rheumatologists got the false idea that it is necessary for patients to demonstrate inflammation by having elevated markers. This is just not so, and has been proven many times. Patient surveys and academic studies show that it "just ain't so." I went through 30 years of paper and electronic medical records of metabolic tests and, no matter what I was going through at the time I have NEVER had an inflammatory marker over the normal range.

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Hi @redhen, welcome to Connect. Thanks for sharing you personal experience. It helps when it's coming from someone has been through the testing and diagnosis. My experience was a little different. My Sed Rate was high or rather maybe just elevated for both occurrences of PMR when I was diagnosed. From what I've read you can have the symptoms for awhile before you have elevated numbers from the tests and the tests don't necessarily provide a conclusive diagnosis.

Erythrocyte Sedimentation Rate and C-Reactive Protein: Old But Useful Biomarkers for Pain Treatment
https://www.practicalpainmanagement.com/treatments/erythrocyte-sedimentation-rate-c-reactive-protein-old-useful-biomarkers-pain-treatment
Erythrocyte sedimentation rate and C-reactive protein
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4653962/

Are you still on Plaquenil for your Sjogren's Syndrome?

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@johnbishop

@anniegal, that is really good news. It's great to advocate for your health and I think it has to play a bigger part in the future of healthcare. There is another discussion on Connect you might find helpful.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thanks John. I will check this out.

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@digregorioj

@anniegal – thanks for sharing your story. Do you have tinnitus as part of your symptoms? With the exception of the hip pain, our systems are pretty much the same.

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Yes I do. We I am hearing impaired. I notice the tinnitus more at night.

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@lioness

@anniegal This maybe my case as my CRP sed rate where high when first diagnosed with PMR but then they where normal and no one believed me so in May have appt. with new rheumatologist and talk with him

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I hope you get good support from your new specialist. Normal SED and CReactive protein labs occur in about 20% of patients according to my rheumatologist and is reported in the literature.

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@dsteede

I was dx with RA in 2011 and PMR in December on 2018. I also have normal SED and C reactive protein. I started on 20 mg prednisone with almost immediate pain relief. I am down to 7.g at this time.

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Thanks for your reply. My response to prednisone was immediate. I had been treated with it sporadically for systemic tendonitis and bursitis and by injection for rotor cuff tears. No one connected the dots with PMR. l am at ll mg from 20 mg initially about 45 days ago. It is amazing to be able to move.

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@anniegal

I hope you get good support from your new specialist. Normal SED and CReactive protein labs occur in about 20% of patients according to my rheumatologist and is reported in the literature.

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@anniegal Thanks I am looking forward
to talking with him Im taking my original papers from the Dr that diagnosed me with it My neck shoulder area hurt this morning but when I was on Prednisone it stopped the pain but no Dr since perscribed it

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I don’t know what state you live on but medical cannibis has changed my life drastically for the better.

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@donnak142

I don’t know what state you live on but medical cannibis has changed my life drastically for the better.

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Hi @donnak142 – my son also mentioned this to me, but unfortunately we do not have that available in New Zealand. Are there any side affects with this and do you also take Prednisone? Prednisone has really mucked my body around and I would have dearly loved to have had the option to take a drug that is purely natural than Prednisone, which has such bad side affects. Don't get me wrong, I am thankful that there was a drug that could help me with PMR and it gave me some sort of life back but I can't wait to get off it.

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