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.

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?

@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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Hi @rolandhp – it might be worth it to try the 20 mg in the morning to see if it gets you through the entire day. I’ve been on 5 mg for a couple of weeks taking it first thing in the morning but today I was going to see if splitting it into 2.5 in the morning and evening will work and help me get off sooner. 2 months is not a long time from my experience with my first episode and the second one started around last August. So I would stay on the dosage until you can taper off a small amount at a time.

John

Liked by LilyMarlene

Yeah I think you might be right

@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?

Jump to this post

@rolandhp– I’m sorry you’re having issues with adjusting to the dosage. I was diagnosed with PMR in October 2015. Initially on 15mg of prednisone and felt relief the day after the initial dose. My rheumatologist started weaning me off at 2.5mgs every two weeks. I started feeling the affects of PMR once below 10mg (7.5mg) and went back to 10mg. That helped but found I was waking in the morning in pain. My doctor recommended taking 7.5 in the morning and 7.5mg at night. That didn’t work because the night dosage interfered with my sleep and caused stomach issues. Went back to 15mg in the morning and started the weaning process all over again. BTW, the 15mg dosage once per day did take care of my morning pain.

All was going well until last March. I was down to 2.5mgs once a day before I my relapse. I am now on 20mgs once per day and will start reducing 2.5mgs every four weeks starting next week.

It’s very surprising to me how 1-2mg reduction can make a difference on how I felt. You may have to reduce 1/2-1mg at a time.

The most frustrating thing (other than the pain) to deal with, for me anyway, is trying to find the optimal dose AND to figure out the correct reduction schedule.

Good luck and keep us posted on your progress.

@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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It is frustrating and I’m sure it’s different for each of us which makes it really difficult to taper off of prednisone. My first occurrence it took me about three months going between 1 and 1/2 mg before I was finally able to completely stop taking it. I’m at 5 mg dosage now on the 2nd occurrence of PMR and today thought I would try to split the dosage to 2.5 in the morning and 2.5 mg in the evening. Here it is mid afternoon and I’m still feeling OK. Kind of like the guy that jumped off a 10 story building and every floor you could hear him saying “so far, so good”. Hoping we all are able to have Mr. Nasty go into remission for a long long time.

Good luck!
John

@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 guess I still have a lot to learn I was diagnosed in April so I guess I am a newbie with this strange ailment. Working with my dose don’t yet know if 10 AM & 10PM mg’s works well some mornings I have a small amount of pain & other mornings it is bad. This is frustrating but I will get a handle on it. Also it depends what kind of activity I do during the day that determine how I will feel the next morning.

@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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One of my problems is that I am very active & yes it is frustrating & have very little patient with this, I had a heart by-pass done 5 years ago & that was easier then dealing with this PMR thing. Can’t imagine having a relaps once this goes into remission if it ever does.

@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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Active is good. I had to go back to taking the 5 mg for the day instead of splitting the dosage. Had a little shoulder pain this morning.

@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?

Jump to this post

A little shoulder ailment in the morning I can deal with but when it involves the hips & both shoulders & can’t do much till about noon now that is where my problem lies. Yesterday I took 10mg in the morning & 10 mg with evening meal this morning right shoulder hurts will see how that ends up tomorrow morning because I skip the prednisone today????

@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?

Jump to this post

I there a reason your doctor has you skip a day? Is it part of his taper off schedule? I am not a doctor, but everyone I know who have taken prednisone in the past have never skipped a day while tapering off the medication.

Unfortunately it may take 1-5 years for PMR to go into remission. My Mayo rheumatologist told me he has had some patients on prednisone for over 6 years, I’ve been on it since October 2015. My local rheumatologist wanted me off in 8 months!

Today I reduced from 20mgs to 17.5mg per day, once in the morning. BTW, I’ve read and my doctor confirms, prednisone should be taken before 9am. Something to do with the way the body processes the medication. You may want to google it if you haven’t already.

As far as being active, John is correct. The worse thing you can do is NOT stay active. I find walking helps a great deal with the hip pain.

Hang in there!

@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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Oh yes I do stay active 4 days at the gym, I also am a cyclist & motorcyclist plus do a lot of volunteer work. Like I had said before I’ve only had this since March so it is still new to me. Now the steroids is it suppose to help cure it or is it just to live pain free while the PMR decides to go into remission? I use my primary doctor as the closest rheumatologist is 150 miles but my Dr. said he has other patients that he treats for PMR

@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?

Jump to this post

That’s a good question. My rheumatologist explained it to me as arthritis all over the body. I don’t think the steroids cure it but help reduce the symptoms/inflammation that causes the pain (non medical opinion). I’m not sure why it goes into remission. My first occurrence was in 2007 and lasted until 2010. My second one started in March 2016 and I’m hoping doesn’t goes as long.

John

Liked by LilyMarlene

@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?

Jump to this post

My understanding it is not curable but manageable. Did your doctor test your sedimentation rates?

Here’s a link you may find helpful.

http://www.arthritis.org/about-arthritis/types/polymyalgia-rheumatica/

@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?

Jump to this post

Another….

http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/definition/con-20023162

@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?

Jump to this post

This what I have heard that it is not curable & yes my Dr. did a sedimentation test along with 3 full pages of test just to eliminate arthritis. Thanks for the link.

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