How to address PMR pain while decreasing prednisone

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

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

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.

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.

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.

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.

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.

@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/

@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.