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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

@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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Well I myself also hope it does not last that long matter of fact I hope it is in remission by fall my wife & I are down hill skiers & I sure would hate to miss this years season. At age 76 you never know if that will be your last or not

@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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As long as the symptoms are under control, PMR should not prevent/limit you from doing anything you want. I’m 62, play golf 4-5 times a week and do not have many issues while on the correct dosage. About 3-4 weeks ago it was a struggle to get out of bed, let alone go play golf. Once I increased my dosage from 10mg to 20mg, I felt very good. In fact, I just got back from a 3 mile walk and feel pretty good.

When I was first diagnosed, I was anxious to get cured and move on. I made the mistake of trying to taper off prednisone too soon. However, I was only following my doctor’s advice and tapered according to his schedule, not mine. Your body is your best guide, everyone is different.

I would encourage you to look forward to ski season.

@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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Thanks for the words of encouragement, this morning not moving so good

@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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No you indicated that you see a rheumatologist at Mayo is it the one in AZ or MI or Fl

@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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Minnesota

@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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Well if I don not get better results with this situation I am in it will probably be my next step that is visit the Mayo clinic in Scottsdale 150 miles away but an easy drive.

Well here I am now 1 week on prednisone which I was on before. Now they have it balanced out I take 10mg in the AM &10mg with my evening meal. This has worked I have eliminated my shoulder pain now just have a discomfort now & then but nothing to complain about. Wed the 31st they will start to wean me off that dose. Doing well I am now able to ride my motorcycle & hit the gym 4 time a week. Amazing compared to what I was going through a week ago.

@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 John as you probably read on another response to mach2 I am doing very good at least for the last 10 days. I was in bad shape on May 15 made an emergency to the Dr. on that day, As you remember me saying that he had me on 20mg every other day well he changed that to 10 in the morning & 10 in the evening everyday now that helped me 95% also along with taking oxy. for 2 days to help with the pain. Now I go see the Dr. on Wed. 31 & I guess he will start weeing me off at a very slow pace This he sure been a learning process for me. The funny thing about it is the same dose but taking it a the proper time.
I am back with my normal activities with no problems.

@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 is really good news Roland. This PMR stuff can be a real pain (no pun intended!). I have been on 5 mg going on 3 weeks but had to add 1 mg Monday and Tuesday because I was starting to ache a little more than normal. I went back to 5 mg this morning so will have to see how it goes the rest of the day.

Hope you have a great day!
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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Yes this is good news for me especially when I can go back to my normal daily activities. Now comes nest week & start coming off the pred. Now that might be a different story lets hope it is easy. Will let you know. What I’m worried about is the 1 mg here & there. Another learning process I suppose. Take care with your playing around with your med.

@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.

@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.

@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

@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.

@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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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

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