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.

@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 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″

@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.

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.

@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.

@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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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.

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

@mach92

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

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Very sorry to hear the you have had a relapse, hopefully the pred. will help you stabilize the PMR. Its probably like starting all over again but at least you now know what it’s all about & it’s probably easier to deal with the problem. Myself I am still on 10 mg/day & it has kept my PMR problem in check I would like to start decreasing my dosage but am very skeptical about doing so & now hearing about your relapse I am doubly skeptical but eventually I will have to. I went through the night time pain & I do not want to experience that again. Hang in there & please keep in touch & let us all know how your latest treatment is going.

@mach92

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

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Hello @mach92, Sorry to hear of the relapse also. Thank you for the reminder of the cherry juice concentrate. I also was taking it for awhile and stopped for no reason. I still take the CoQ10 supplement along with some others for my PN. I’m currently at 3 mg prednisone for my PMR but have been on that dosage for about a month so I’m planning to switch to 2-1/2 mg dosage tomorrow and see how that goes. I also have some sharp pains at the top of my leg joint from about 3 weeks ago when I think I pulled a muscle or ligament while trying to push my tractor snowblower that was on a dolly up an incline to get it ready to be picked up for service. Dumb idea on my part. The joint hurts when I try to roll over in bed and going up stairs, getting in/out of the car similar to yours.

@rolandhp, glad to hear your PMR is being held at bay. Don’t be skeptical! We can beat this beast. Just keep taking it one day at a time, do what you can and unlike me – know your limitations ☺

Hoping for a pain free weekend for all.

John

@mach92

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

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@johnbishop..best of luck with your dosage reduction. I most likely started to reduce too soon and too fast.

@rolandhp…yes, it does feel like I’m starting all over. It was two years last month that I was diagnosed with PMR….hard to believe. Got down to 2.5mg last March, but had a major relapse ironically while visiting the Rochester Mayo Clinic. Felt pretty good most of the summer on 10mg, but this recent relapse caught me off guard. I’ll taper much slower this time….1/2-1mg per month.

@mach92

Well unfortunately I’ve had a relapse and I am back to 15mg of prednisone per day. I had been doing fairly well most of the summer, tapered down to 7.5mg, but started having symptoms of PMR late September. However, this time it is primarily in my hip/pelvic girdle, not upper back and shoulders. I noticed it initially while getting out of my car or walking up a flight of stairs. Didn’t think too much about it, but everyday the pain intensified and was interrupting my sleep. My Rheumatologist recommended the increase in dosage; however, it did not help ease the pain while sleeping. For that he prescribed Tramadol, which I take before going to sleep. It does help with my sleep, but I am concerned with the long term effects.

I will confess I stopped taking CoQ10 and cherry juice concentrate. Don’t ask me why, I do not have a good answer. I was doing very well while taking these supplements.

Today I am resuming my daily supplement of Ubiquinol CoQd10, cherry juice concentrate as well as turmeric. Hopefully I’ll see positive results just as I did earlier this year.

I’ve been off line for most of the summer and hope John, Roland and the rest are doing well with their respective treatments.

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My first occurrence of PMR was in 2007 and lasted 3 years. I think I did what you did and tried to go down to fast. The last 6 months of the 3rd year was going up and down between 2 and 1 and then 1 and 1/2 mg dosage. Hope you are getting close to putting it into remission.

@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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Hey John, I know I’m replying to an old post here, but anyway hoping you get it.
I was doing so good, on 1/2 mg of prednisone. Felt like I was almost completely healed, then bam!, all came back. I am back up, (on my own decision), to 2 mg. I am also taking 1-2 tramadol, 50 mg a day. That is something new, bc I wasn’t doing that before. I see my Rheumatoid Dr at the end of January, but have decided to see another rheumatoid Dr for a second opinion. My pain has been terrible and I am somewhat depressed at my quality of life at 59 years old. I work from 5am till noon each day and then pretty much go home and lie on the couch for about 3 hrs. Not much activity. I do try to walk my dog about 15 minutes a day and this forces me to get some exercise. I’m wondering if I increase my prednisone again, that my pain would go down some. I know only my Dr can advise, just asking your thoughts. Now I’m wondering if I have rheumatoid arthritis, although I have no swelling of the joints, or have I been misdiagnosed. I just don’t know. Got anything to share w me?
Barbararene’

@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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Hello barbararene…this is Joe (Mach92). I’m sorry you had a relapse. When were you diagnosed with PMR? I assume you had all the required blood test testing your inflammation markers? BTW, when I was diagnosed, ALL my blood test were normal. I sure didn’t feel normal.

Last March I also had a relapse after reducing from 15 to 2.5mg of Prednisone over a 17 month period. Like you, I thought I was in remission. Ironically I was at the Mayo Clinic at the time for second opinions. The Mayo rheumatologist suggested I go back to 7.0mg, since I had just reduced to 2.5 a few days earlier. However, 7.0mg didn’t help and I ended up starting over and going back to 15mg. BTW, once I returned home and visited my local rheumatologist, he put me on 40mg of Tramadol….my first time. I was having difficulty sleeping through the night as I would wake up in a lot of pain and unable to get back to sleep. It did help!

Since March I’ve been trying to reduce my dosage of prednisone 2.5mgs at a time at 3-4 week intervals. My doctor gave me the green light to adjust up or down at my discretion. I am currently on 10mg and hope to reduce to 7.5 in two weeks. BTW, there were times I did have to increase the dosage. So it’s been somewhat of a roller coaster ride for me. Presently (knock on wood) I am doing OK on 10mgs. I see my rheumatologist on Monday.

Unfortunately everyone with PMR will have a relapse at some point. I can’t tell you to increase your medication, only tell you what worked for me. I would encourage you to stay active, walk your dog daily…..it does help.

I’m sure John will reply as well. He is a wealth of knowledge and an inspiration!

@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 @barbararene, sorry to hear your pain has come back. I’m still struggling a little with my second round of PMR. I’m down to 3 mg and plan to go to 2-1/2 mg next week for 2 weeks or a month depending on how I feel at the time. I think when you get to the lower doses of prednisone you can be flexible to try it a few days to see if the pain goes away quickly with a little higher dosage. I would go for it.

It’s not a bad idea to get a second opinion from another rheumatologist if the symptoms are changing or you get some new ones. My rheumy told me that PMR is arthritis all over the body when he described it to me the first time it was diagnosed. It went away for 6 years and I’m hoping I can get off prednisone again and it will stay in remission for awhile. I have to believe diet plays a large part in the day to day feelings but have no proof other than to know when I eat really good, I feel better ☺

Hope you can let us know how your appointment goes with the Rheumatologist at the end of January.

Hoping for a pain free weekend for all our PMR and PN folks out there.

John

Hello @sistersister9845 — Welcome to Mayo Connect! I'm glad you found us and want to share your story. Thank you for the private message (PM) asking me where to post your story. Because I used your Connect user name in this post you will receive an email notification. Click the View & Reply button at the bottom of the email you received and it will take you to my post here. Then just click the Reply button at the bottom of this post and share your story.

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Hope this helps…

~ 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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I have not been given Prednisone as far as I know. I do know every time I go to the doctor, she gives me a shot before I leave. It is a Steroid Shot. Is that Prednisone? I just know the pain calms down and I am alive again. At this point I hurt so much and feel like I am working my heart much to hard, I would take anything to get past this. All these initials,,,,,I don't know what they mean. PMI, PMR etc. My doctor appears to be serious in her treatment, but I don't know how much longer I can take this pain. Just getting up in the morning is a large chore. I took CoQ10 for some months. I believe it was due to my heart not getting something it was supposed to get. It was being depreciated by the drug I was on. There are so many complications associated with this disease. This not only takes everything out of me, but it also had put a valley between my kids and Myself.

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