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 | Jun 1, 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 June 1 still feeling pretty good yesterday they started cutting me back on my pred. 10 mg in the AM & 5 mg in the evening. Will see how that goes. On occasions I notice the aches in my shoulders but nothing close to what I had experienced. Will keep you informed on how the new dose of pred. is working out. Having to fly to FL today for a funeral will be back on the 7th.

REPLY
rolandhp | @rolandhp | Jun 9, 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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Sure is hard staying regulated with the pred. when traveling I mean the time change that we have to go through. Still on 10 in the AM & 5 in the PM. it is still working as it should. Still getting some pain in my shoulders but I can cope with that very easily without increasing my dose. I am being patient with my PMR knowing that it takes a good while to go away.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 9, 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 Roland, it's good to hear that you are keeping it under control. The up and downs of PMR can be a daily challenge sometimes. I'm back to 6 mg from 5 due to some extra shoulder and arm pain the past few weeks. Hoping to start tapering the dosage again next week but it is like you say a challenge. John

REPLY
rolandhp | @rolandhp | Jun 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 just came back yesterday from a 800 mile motorcycle ride. Still doing ok with my 10 & 5 pred. regiment, I just have a little discomfort but right now I don't think it is worth increasing my dose. The discomfort is mostly when I awake & evenings but that is all just a discomfort. I suppose with what you said & what I read about PMR it should go away on it's own that is with the help of pred. So far so good I have had not reactions from the pred.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 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

Jump to this post

Sounds like you had a fun ride and like to stay active. I think staying active is key to helping with PMR or any kind of arthritis. It just gets a little harder the older you get (for me anyway). My biggest issue is the weight gain so I have to make it a point to get some activity in addition to really watching what and how much I eat. I have to focus my mindset on eat to live instead of live to eat.

Hoping your PMR will be short lived and go into remission soon.

John

REPLY
rolandhp | @rolandhp | Jun 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

Jump to this post

That is my biggest concern about steroids I hear that one retains water making you put on weight so I am watching that very closely. When I came down with PMR I was at 148 since then I lost 10 lbs & being on pred. I am still at 139 of course I stand at only 5'6"

REPLY
rolandhp | @rolandhp | Jun 19, 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?

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Last Tuesday 6-13 I dropped my pred. in the AM to 5mg & still taking 5mg with dinner. Well that did not work out so well Friday had to go back to 10mg in the morning. Shoulders were really starting to bother me, still experiencing discomfort in the morning but around 10 AM it is mostly all gone I think I am pushing it to much that is I am just to anxious for it to go away & with all that is told to me about PMR it has to run it's course.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 19, 2017

Roland I can really relate to what you are going through. My PMR was in remission for 6 years until it came back a year ago. I am so anxious to get off the prednisone I could scream sometimes. I started at the 20 mgs and have been between 7 and 5 mgs for the past 2 months. Every time I try to taper to 5 my arms and shoulders start hurting and it seems to affect my carpal tunnel in my hands too although I don't think it's related. I went back to 7 this morning and may start experimenting with 5 mg in the morning and 1 at night to see if it makes a difference. Just have to keep going one step at time and don't give up.

REPLY
2 replies
rolandhp | @rolandhp | Jun 19, 2017
In reply to @johnbishop "Roland I can really relate to what you are going through. My PMR was in remission..." + (show)
@johnbishop

Roland I can really relate to what you are going through. My PMR was in remission for 6 years until it came back a year ago. I am so anxious to get off the prednisone I could scream sometimes. I started at the 20 mgs and have been between 7 and 5 mgs for the past 2 months. Every time I try to taper to 5 my arms and shoulders start hurting and it seems to affect my carpal tunnel in my hands too although I don't think it's related. I went back to 7 this morning and may start experimenting with 5 mg in the morning and 1 at night to see if it makes a difference. Just have to keep going one step at time and don't give up.

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Well John yes it is frustrating. I am not working with a rheumatologist just my primary care doctor & he has other patients like me so I think he is doing me some good. He has explained to me that what he is doing would be just like me going to Scottsdale Mayo. No-one has a handle on what we have, it's just regulating our pred. No 2 people that have it can be treated with the same dose. It has to run it's course. A little discomfort I can live with if it means taking a lower of the steroids. We have to hang in there & hope it goes away.

REPLY
rolandhp | @rolandhp | Jun 20, 2017
In reply to @johnbishop "Roland I can really relate to what you are going through. My PMR was in remission..." + (show)
@johnbishop

Roland I can really relate to what you are going through. My PMR was in remission for 6 years until it came back a year ago. I am so anxious to get off the prednisone I could scream sometimes. I started at the 20 mgs and have been between 7 and 5 mgs for the past 2 months. Every time I try to taper to 5 my arms and shoulders start hurting and it seems to affect my carpal tunnel in my hands too although I don't think it's related. I went back to 7 this morning and may start experimenting with 5 mg in the morning and 1 at night to see if it makes a difference. Just have to keep going one step at time and don't give up.

Jump to this post

It looks like my problem is trying to get off the steroids to quickly. Before I try to drop my dose again I will wait another month, of what you are saying at 5 mg looks like the bottom line which it was for me. So I will stay at 10mg in the morning & 5mg at night that seems to be working for me, I guess 15 mg total in a day is ok.

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