Polymyalgia Rheumatica (my story)

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.

@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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John, I would rather be weened off of Prednisone than morphine. My Primary doctor thought it was in my best interest to use morphine instead of sending me to a specialist. WRONG. You never want to come of Morphine. NEVER.

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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Rolandho…I have no idea how you work. If I had to work, you might as well lock me up. I barely get around, and I am much to young to e in this shape. 75. I have always had tons of energy and walk circles around my friends who are my age. I swore I would never get to the point that living was not worth it. I just know my doctor must have an answer for all this pain. I do have a referral to a pain doctor now. I see the doctors at the University of Texas. Almost as good as Mayo. But, they do not prescribe pain meds. People like me are being punished because of the actions of a few addicts.

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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Hello @oregongirly, I'm sorry for the confusion. Acronyms can be a problem when you are trying to understand what it is. PMR is the acronym for polymyalgia rheumatica which was explained to me by my Mayo rheumatologist in laymans terms as arthritis all over the body. For me it's been legs, shoulders, arms and hands it my two rounds with it. Prednisone was what worked for me and if I'm not mistaken it's the drug of choice for PMR. I have had a corticosteroid shot in my knee years ago for some pain issues related to an injury but I'm not sure if it's what your doctor is doing for you.

@oregongirl, I would recommend talking with your doctor specifically about what the shot is and what your diagnosis is. They should be more than willing to discuss it with you.

I found the following information on the National Institutes of Health site that may help explain the treatment with corticosteroid shots.
Treatment of polymyalgia rheumatica with intramuscular injections of depot methylprednisolone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1004588/

John

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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Prednisone is no cake walk tapering off but I do agree with you that it's definitely not as bad as other drugs, morphine being one of them.

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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John, I agree that the communication needs to be better between my doctor and myself. However I have had the RA for some time and it was not treated. But once I saw a Rheumatologist, Things started moving in the right direction. My problem is mornings. I am in SO much pain and sick all over. I take my shot Methotexate on Sunday. Monday, I am sick as can be. How can anything that makes me this sick be any good to me? I had to see an oncologist because a blood workup showed some activity. But after two visits, I have been told I do not need to see him for 6 months. I am seeing a Gastrologist today because my swallowing is getting bad. Since I learned more about this symptom, I am very careful to take small bites of food. I have sores in my mouth and one on my lip which will not go away. The sores are different from a Canker Sore. I am so frustrated. I see my physicians at the University Clinic. Doesn't anyone know what is wrong with me besides Rheumatoid Arthritis? At first my kids thought I was over reacting to say I did not feel well all the time. You know, we dont bleed so it is difficult to see our pain. I also take Vit D and Folic Acid . Any ideas about where I am headed? This morning the pain was so bad I wanted to quit all drugs and die. That is not an option. I am only 75 and I want to live another 10 years and see my grandchildren marry.

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@rolandhp

Well bad news this morning very sore did not get much sleep last night will try again today 10 in the morning & 10in the evening will see what happened tomorrow taking none. Yesterday I had a very good day worked for 9 hrs. for the PD. But come 5PM the pain starts & stays until morning. Are you experiencing the same effects? Also I started fighting PMR in March should I give more time for results?

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No one has offered me anything for pain. Its as if they do not prescribe pain meds at University. Finally after the spine doctor saw the condition of my neck and spine, he referred me to a pain specialist. I hate trying to explain to the dr that my pain is bad. I think they think that we are all trying to get pain meds. YES WE ARE. It hurts.

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@rolandhp

Well bad news this morning very sore did not get much sleep last night will try again today 10 in the morning & 10in the evening will see what happened tomorrow taking none. Yesterday I had a very good day worked for 9 hrs. for the PD. But come 5PM the pain starts & stays until morning. Are you experiencing the same effects? Also I started fighting PMR in March should I give more time for results?

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I consider myself blessed if I have 4 days with no pain. I try to cram in as much as I can to get done in those 4 days.

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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Hello @oregongirl, I know you are frustrated with the treatments and the doctors not being able to diagnose what's going on with your health. We are the same age and I'm with you – I'm looking for another 10+ years. You are asking a lot of good questions that I'm not the one who can answer. You are your best advocate and you have laid out a lot of your symptoms here. May I ask a question and offer a suggestion that has helped me in the past?

Do you go to your appointment prepared to discuss specific questions you have with the doctors? I like to write down a list of questions I have for the doctor along with the related symptoms I'm having so that I don't forgot to ask them in the heat of the moment. I try to write them in a bullet list format so that while I'm talking with the doctor I can read from the list and give it to him when I'm done.

John

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@johnbishop

Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about prednisone. It is the magic bullet for polymyalgia rheumatica (PMR). My first diagnosis of PMR was in 2007 and I was put on 20 mg of prednisone. Within hours of taking the first tablet the pain was pretty much gone. It took me three years to taper off of prednisone. The last six months was going back and forth between 1 mg and 1/2 mg dosage until I was finally able to get off in 2010. The PMR reared it’s ugly head again in March 2016 and I was back on 20 mgs of prednisone. I’m now at 5 mgs and trying to taper down by 1 mg a month but will have to see how it goes. It does have it’s side affects but I think staying active like you do helps. I ride a recumbent exercise bike 4 to 5 mornings a week for 30 minutes but have trouble doing much else due to my peripheral neuropathy and the numbness in my feet.

Wishing you luck on tapering off the prednisone and hoping your PMR goes into remission.

John

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I always have questions. I know I have RA, but I could not understand why I had to see an oncologist. Well, she had seen something on my blood workup and did not want to treat me for RA until she had answers. She started to treat me. I trust her. Its just that I am sick of being sick. I wonder how much my heart can take. My older daughter wants me to look into Independent living. I know they mean well. And, I probably would get more exercise. However….I see myself much younger than they do. I have to face reality and take a handle on my living arrangement. I sold my home and am living in my son't guest house. FORGET it… I cannot stand being that close yo my kids

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@rolandhp

Well bad news this morning very sore did not get much sleep last night will try again today 10 in the morning & 10in the evening will see what happened tomorrow taking none. Yesterday I had a very good day worked for 9 hrs. for the PD. But come 5PM the pain starts & stays until morning. Are you experiencing the same effects? Also I started fighting PMR in March should I give more time for results?

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Do any of you take Methotrexace? Have you had Infusions? I am wondering if it is all too much for me.

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