1. < Polymyalgia Rheumatica (PMR)

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.

rolandhp | @rolandhp | May 12, 2017
In reply to @johnbishop "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..." + (show)
@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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Hi again on one of my reply's to you John a couple of days ago I had said that my Dr. recommended 20mg of prednisone every other day. He also said that I could take half in the AM & the other half in the PM but still every other day. Now that seems to help especially taking half in the evening this way I am not to sore when I awake in the morning.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 12, 2017
In reply to @johnbishop "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..." + (show)
@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 have some 2.5 mg prednisone tablets left from a previous script so I may give your approach a try. Normally taking the 5 mg in the morning I feel OK during the day but start feeling a little stiffness/pain in the evening so this approach may help. Thanks for the information!

John

REPLY
rolandhp | @rolandhp | May 12, 2017
In reply to @johnbishop "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..." + (show)
@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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Well yes this is my approach to the matter okay in the afternoon but come evening & of course the next morning I hurt. So as I said I take 10mg in the AM & 10mg in the PM then skip a day as the Dr. told me to do. I am still not sure about skipping a day it may be okay & maybe not. Will let you know

REPLY
rolandhp | @rolandhp | May 13, 2017
In reply to @johnbishop "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..." + (show)
@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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Well here it is May 11 odd day so no prednisone today. This morning my pain is almost non existence is it because I took half of my prednisone last night? I sure hope so but lets see how I feel this evening. I have a full day ahead of me working for our local PD.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 13, 2017
In reply to @johnbishop "Hello @mach92, welcome to Connect. Thank you for sharing your story. You are so right about..." + (show)
@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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That's great news! I'm going to try it today with 2.5 this morning and 2.5 tonight to see if works for me also. John

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rolandhp | @rolandhp | May 14, 2017

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?

REPLY
23 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 14, 2017
In reply to @rolandhp "Well bad news this morning very sore did not get much sleep last night will try..." + (show)
@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

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

REPLY
rolandhp | @rolandhp | May 14, 2017

Yeah I think you might be right

REPLY
mach92 | @mach92 | May 14, 2017
In reply to @rolandhp "Well bad news this morning very sore did not get much sleep last night will try..." + (show)
@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.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 14, 2017
In reply to @rolandhp "Well bad news this morning very sore did not get much sleep last night will try..." + (show)
@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

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

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