Successfully treated for Polymyalgia Rheumatica

Posted by mach92 @mach92, May 4, 2017

Please allow me to introduce myself.......I am a retired 62 year old male, in Stage B heart failure and diagnosed with PMR in October 2015. Because of my occupation, I was required to have physicals every 6 months and EKG's every year after the age of 40. For 40 years I was active, jogged 15-20 miles per week, watched my diet, BP was mostly normal, cholesterol normal, weight normal....basically in very good shape. August 2012 I had a stent placed in my LAD and at that time they discovered I had had a heart attack sometime in the prior 10 months (the time since my last physical and EKG). I was shocked. BTW, I was jogging the day before they implanted the stent with NO symptoms. A story for the cardiac board.......

Fast forward to the fall of 2014......when waking in the morning, I was experiencing full body aches and pains. I told my wife it felt like somebody beat me with a baseball bat. The symptoms did get somewhat better during the day; however, I found it getting more difficult working out AND recovering from a workout. I could never recover....the aches, pains, fatigue and stiffness never went away. I thought it was cardiac related. Explained the symptoms to my cardiologist, he said it could be because of a weakened heart plus medications. I was taking Lisinopril and Bystolic. He thought changing the beta blocker would provide some relief.......it didn't. After heart echo's, MUGA tests and a cardiac MRI, it was determined my heart condition wasn't the cause of my aches, stiffness and pains. BTW, I did consult with my PCP throughout this whole process. All my blood work came back normal. No signs of trouble...period. He didn't have an answer other than "watch your diet and get more exercise"! I told him in the most polite manor I could "Doc, I've been doing that for 40 years!!". He said maybe I should see a rheumatologist.

October 2015 I saw a rheumatologist and although all my blood test came normal, based on my symptoms he diagnosed me with PMR. BTW, by this time I was in pretty bad shape. Couldn't do any type of exercise, even hated waking up at night or in the morning because the pain was so bad. He place me on 15mg of Prednisone and said I should start feeling better in 4-5 days. I filled the script and took the first dose in the car!

Upon waking the next morning, I laid there in total disbelief......there was NO pain. I actually had to pinch myself, thought I was dreaming. I couldn't believe how good I felt. Hadn't felt that good in a long time. Finally I had an answer.

Since the initial dose, my rheumatologist has tried to wean me off the Prednisone with little success. I did get down to 2.5mg's last month, but unfortunately had a relapse ironically while visiting the Rochester Mayo Clinic for a cardiac and PMR evaluation. Although I've never had any side effects, I did not like taking the Prednisone....don't ask me why, could be the fact that it does shut down the adrenal glands! The Mayo rheumatologist did put my mind at ease by explaining he's had patients on much higher doses for over 6 years and never NOT had adrenal glands recover. He recommended I increase my Prednisone to 10mg per day. I did and it did help somewhat, but I did not recover 100%. Three days ago, my rheumatologist increased it to 15mg and today I am finally feeling better. I'll stay on this dose for 3-4 weeks and slowly begin the weaning off process all over again.

Sorry for the long post, but hope this will help others who may be struggling with this disease and treatment plan. BTW, I have read many posts on this board regarding PMR and appreciate the input from so many on this disease and their personal experiences. I hope my experience has help as well.

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

@emo

I hope it helps! With the recent approvals of biologics for PMR I wonder if it will be more common to treat it with biologics as opposed to long term prednisone, as it is with other inflammatory conditions… If only it were easier and more reliable to get insurance to cover them for more people. Wishing you all the best.

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@emo @daenika87 I am looking at old posts and hope you both are well -- if you look ta the conversation i started about this year's ARC meeting -there will be a "great Debate" about using biologicals in PMR patients :
https://connect.mayoclinic.org/discussion/acr-convergence-2023-nov-program-abstracts-are-available-for-view/
"panel discussion : 13M116: Great Debate: Should PMR and GCA Be Treated with Advanced Therapies at Disease Onset?"

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@nyxygirl

@emo @daenika87 I am looking at old posts and hope you both are well -- if you look ta the conversation i started about this year's ARC meeting -there will be a "great Debate" about using biologicals in PMR patients :
https://connect.mayoclinic.org/discussion/acr-convergence-2023-nov-program-abstracts-are-available-for-view/
"panel discussion : 13M116: Great Debate: Should PMR and GCA Be Treated with Advanced Therapies at Disease Onset?"

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The original poster said the following:
"The Mayo rheumatologist did put my mind at ease by explaining he’s had patients on much higher doses for over 6 years and never NOT had adrenal glands recover. "

I took high doses of prednisone for more than 12 years for PMR and other autoimmune problems. I didn't like prednisone either and I believe it was adrenal suppression that was causing most of the problems.

Cortisol is what regulates inflammation. Whenever my prednisone dose wasn't high enough, I flared. Prednisone replaces the cortisol the adrenals produce. People either need prednisone or cortisol from the adrenals. Unfortunately, the adrenals won't produce cortisol until a person can maintain a low dose of prednisone for an extended period of time.

The biologic I took kept the inflammation in check while I maintained a low dose of prednisone. The low dose of prednisone allowed my adrenals time to get up to speed and start producing "adequate" amounts of cortisol again. My endocrinologist said my cortisol might not be adequate all the time but I could take prednisone again if I needed to. I was able to eventually get off prednisone but it took several attempts.

Getting off prednisone would have never happened except for the biologic I took. My rheumatologist said a biologic was my best chance of ever getting off prednisone.

An "expert" on another forum suggested I take prednisone for the rest of my life. I'm glad I opted for the biologic instead. I have been off prednisone for almost 4 years and I feel much better being off prednisone. It is a personal choice and a biologic may not be the best option for everyone.

Is it too late to register for the "Great Debate?"

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@dadcue

The original poster said the following:
"The Mayo rheumatologist did put my mind at ease by explaining he’s had patients on much higher doses for over 6 years and never NOT had adrenal glands recover. "

I took high doses of prednisone for more than 12 years for PMR and other autoimmune problems. I didn't like prednisone either and I believe it was adrenal suppression that was causing most of the problems.

Cortisol is what regulates inflammation. Whenever my prednisone dose wasn't high enough, I flared. Prednisone replaces the cortisol the adrenals produce. People either need prednisone or cortisol from the adrenals. Unfortunately, the adrenals won't produce cortisol until a person can maintain a low dose of prednisone for an extended period of time.

The biologic I took kept the inflammation in check while I maintained a low dose of prednisone. The low dose of prednisone allowed my adrenals time to get up to speed and start producing "adequate" amounts of cortisol again. My endocrinologist said my cortisol might not be adequate all the time but I could take prednisone again if I needed to. I was able to eventually get off prednisone but it took several attempts.

Getting off prednisone would have never happened except for the biologic I took. My rheumatologist said a biologic was my best chance of ever getting off prednisone.

An "expert" on another forum suggested I take prednisone for the rest of my life. I'm glad I opted for the biologic instead. I have been off prednisone for almost 4 years and I feel much better being off prednisone. It is a personal choice and a biologic may not be the best option for everyone.

Is it too late to register for the "Great Debate?"

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Which biologic did you take and are you off of that now also?

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@joybannister

Which biologic did you take and are you off of that now also?

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Actemra is the biologic I currently take as a monthly infusion.

Four years ago, new research showed encouraging results with Actemra. Currently, Actemra is FDA approved for GCA. Another biologic that works in the same way is called Kevzara and is FDA approved for PMR.

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Has anyone tried Tramadol for PMR?

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@marymckeith

Has anyone tried Tramadol for PMR?

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Tramadol is a pain reliever. I take it very occasionally for break through pain when decreasing prednisone levels. My doctor doesn’t want me to take it. Tylenol works pretty well most of the time. Tramadol is considered a lower level opioid.

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@marymckeith

Has anyone tried Tramadol for PMR?

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My Dr gave me Tramadol script but I find Ibuprofen works better on inflammatory pain. Wish I didn’t need either.

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@dadcue

Actemra is the biologic I currently take as a monthly infusion.

Four years ago, new research showed encouraging results with Actemra. Currently, Actemra is FDA approved for GCA. Another biologic that works in the same way is called Kevzara and is FDA approved for PMR.

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What are the side effectsof Actemra ??
I am interested to
Learn of treatments and progress of those of you who have GCA!!
Very much appreciated!!!

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@mahernm

My Dr gave me Tramadol script but I find Ibuprofen works better on inflammatory pain. Wish I didn’t need either.

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Thanks for replying. I don't want to start it either. I will try Tylenol.

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@barracudacool

Tramadol is a pain reliever. I take it very occasionally for break through pain when decreasing prednisone levels. My doctor doesn’t want me to take it. Tylenol works pretty well most of the time. Tramadol is considered a lower level opioid.

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Thanks. I hesitate to take anything else. Will try Tylenol and hope for the best. For you too….

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