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 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.


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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I haven't had any side effects except for some minor lab abnormalities. It isn't clear that Actemra (tocilizumab) is causing the lab abnormalities.

There are potential side effects to all medications.
People with certain pre-existing conditions shouldn't be prescribed Actemra. For example, Actemra should not be prescribed to anyone with a history of diverticulitis. Actemra may cause serious stomach and bowel problems, especially if you have a history of ulcers or diverticulosis.

There is also a risk of serious infections since Actemra affects the immune system. Prednisone also increases our risk of infections. I would say I've had fewer infections on Actemra compared to when I was taking prednisone.

Several other side effects have improved after I got off prednisone. I have stopped several additional medications which were used to treat prednisone side effects.

I tolerate Actemra well but some people will have side effects. I don't want to suggest that Actemra won't cause any side effects.

Actemra may not work for everyone. Maybe I just got lucky. After 12 years of PMR, prednisone and bad luck, I was overdue to have some good luck.

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