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mach92
@mach92

Posts: 15
Joined: Apr 29, 2017

Polymyalgia Rheumatica (my story)

Posted by @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.

REPLY

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

@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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Thank you John. I’m currently researching the benefits of taking CoQ10 to help reduce the symptoms of PMR with the hope it will allow me to taper off Prednisone more quickly.

You have any thoughts either way?

@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 @mach92 – I think anything that helps reduce inflammation may help but that’s just my personal opinion. I was taking CoQ10 but haven’t taken it for awhile. I switched to a Turmeric supplement that has helped others in a neuropathy group that I belong to that also have inflammation related health problems. Here’s a link on Amazon that shows the product and ingredients – http://amzn.to/2qAEveq.
CoQ10 may help just as much. There is a lot of information out there on turmeric and it’s health related use.

There is a Mayo Connect discussion for Turmeric here – http://mayocl.in/2dHSGUS

John

@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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Thank you John for the info and links!

@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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You’re welcome! Please keep us up to date on your progress with tapering off of prednisone and your PMR. Hopefully it will go into remission soon. I had a Toastmaster friend that came down with it the same time that I did in 2007 and his went into remission within a year and still has not come back so there is hope.

@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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UPDATE: Last week my rheumatologist increased my Prednisone from 10mg to 15mg…didn’t feel any difference. Yesterday I decided on my own to up it to 20mg as well as starting a daily routine of taking Turmeric/Curcumin 500mg twice a day, Ubiquinol CoQd10 and 100% Tart Montmorency Cherry concentrate from Traverse City, Michigan. BTW, I live in Michigan. They say they pressed 2,000 cherries into a 32 fl oz bottle!

Not sure what is working but I feel like a million bucks. Went from barely being able to get out of bed or off the couch two weeks ago, to thinking about going for a “lite” jog this afternoon. AMAZING! Again, not sure what’s working but I’m sticking with this “recipe”!!

BTW, talked to my rheumatologist this morning, told him MY plan and he said “ok, reduce to 15mg in two weeks and see how you do”. Not sure I’ll reduce that much, maybe down to 17.5mg and see how I do…….

@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 @mach92! I would keep trying to taper the dosage of prednisone if possible. 20 mg is considered a very low dosage from what I heard from my rheumatologist. I started with 20 mg on my first occurrence of polymyalgia rheumatica and was off in 3 years. The second occurance this past year I also started with 20 mg of prednisone but I’m now down to 5 mg and relatively no pain in my shoulders, arms and hands.

John

@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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Glad to hear you’re doing well on 5mg. How long will you be on 5 and what’s your reduction schedule? This is the first day I’ve been pain free in a long time.

@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’m on week 2 at 5 mg. I’m trying to go down by 1 mg every 2 weeks. My doctor suggested tapering down 1 mg per month but if there is no pain when I drop in 2 weeks then I keep at the reduced level for another 2 weeks. The first episode of polymyalgia rheumatica I went back and forth for three months between 1 mg and 1/2 mg of prednisone until I finally was able to stop taking it with no pain returning. I was doing that a week at time which may not have been enough time. I did discuss with my Mayo rheumatologist on different tapering off schedules.

@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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My Mayo rheumatologist recommended the same reduction, 1mg per month. My local rheumatologist is a bit more aggressive…..think I’ll take the conservative approach and reduce no more than 2.5 every month. That was the schedule I started in 2015 and seemed to work well for me. That is until I had a relapse this past March.

BTW, thanks for the Turmeric recommendation!

@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.

@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

@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

@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.

@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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