1. < Polymyalgia Rheumatica (PMR)

How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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barbararene | @barbararene | Feb 21, 2017
In reply to @charlena "My husband is still on prednisone, it's been nearly 2 years. He has tried several times..." + (show)
@charlena

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Jump to this post

We have to stay in touch and share what each of us finds that helps.
My goal is to keep moving, even when it's difficult!

REPLY
charlena | @charlena | Feb 22, 2017
In reply to @charlena "My husband is still on prednisone, it's been nearly 2 years. He has tried several times..." + (show)
@charlena

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Jump to this post

I am so happy that this forum is here! It always helps to meet and talk with others whose input is so valuable.
My husband works every day, I just wish I could get him to exercise more. He almost never complains, therefore when he
does complain, I know he is in terrible pain.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 22, 2017
In reply to @charlena "My husband is still on prednisone, it's been nearly 2 years. He has tried several times..." + (show)
@charlena

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Jump to this post

Exercise is one of the keys to PMR. I hated doing it but once you get into a routine and find one that is not too difficult or that causes more pain it's not too bad. I bought a recumbent bike, elliptical combination and use it for 30 minutes when I first get up 5 to 6 days a week and then a few times a week I use it in the evenings for 30 minutes while watching the news. It's easy for those that have trouble or don't like walking because it has a larger seat and pedals so doesn't cause joint pain. I also started using a therapy band to see if I can regain some strength in my hands, arms and shoulders.

Keep working on him to exercise!

John

REPLY
2 replies
charlena | @charlena | Feb 22, 2017
In reply to @charlena "My husband is still on prednisone, it's been nearly 2 years. He has tried several times..." + (show)
@charlena

My husband is still on prednisone, it's been nearly 2 years. He has tried several times to decrease, but has always had to go back to initial doseage.
He is again trying a reduced doseage. Do you mind telling us what your symptoms are?
At his last doctor visit as the doctor was going over his symptoms, etc. he made the statement, "..... polymylagia rheumatica, if that is what you have, . .. ." Needless to say, we weren't happy with that statement. Another of his doctors advises that my husband's symptoms are not like any symptoms of patients he sees that have polymyalgia rheumatica. I research daily on my husband's symptoms and when I mention to his rheumatologist he doesn't seem interested in other possibilities. Probably time for a new doctor.

Jump to this post

Thanks, John, for the great info! I use a Pilates chair which can be used for several exercises. He has used this a few times. We also have therapy bands which I will try to get him to use- great idea!

REPLY
barbararene | @barbararene | Feb 24, 2017
In reply to @johnbishop "Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking..." + (show)
@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I'm having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck - your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

Jump to this post

It seems like almost all of my intense pain has moved to my feet. It is especially on the sides of my feet and some on the bottoms of my feet. Still have pain in shoulders and arms, but it's like it has moved to my feet more. I am on 4 mg of predisone. I sure hate to increase the dose but don't know about this. Any thoughts?

REPLY
1 reply
barbararene | @barbararene | Feb 24, 2017
In reply to @amkaloha "Hi Barbararene, I have been meaning to write for a few days and finally have a..." + (show)
@amkaloha

Hi Barbararene,
I have been meaning to write for a few days and finally have a few moments to myself! I was diagnosed with PMR on March 4, 2015 by my primary care doctor who is a D.O. and very much into natural healing as opposed to drugs. I remember when she said it, it looked like she had an epiphany! I guess she put it all together--my high inflammation markers and terrible pain across my shoulders and in my arms that wouldn't go away. I was already on Tramadol but that did not help this. She said the standard drug for PMR is prednisone but she did not want to put me on it because of my higher glucose level. Most often it was near 120 and I was not on any medication, just controlled it with diet, so she didn't want it to go higher or for me to have to take a drug.

There is a whole story as to how I came to the following, but I'll spare you the details and just tell you that we found that methylprednisolone did not raise glucose levels as much as regular prednisone. So, after she tried me on Methotrexate (the 'other' drug of choice) and I got so sick on just one dose of it, she put me on the methylprednisolone 4 mg. I have been on this dosage from the beginning and have tried a few times to go lower by taking 1/2 pill one day then the whole pill for a few days, etc. I could never get to a lower dosage without my pain coming back. In fact, at the 4 mg dosage I still have a little pain in my arms especially when I get up in the morning and sometimes in the late afternoon but I'm not into raising the dosage.

I was wondering if anyone on here could tell me how long it has taken for them to go into remission. I know everyone is different, but I guess I'd like to know if there is some light at the end of this tunnel??? And, Barbara, I'm with you, I drink some wine also but have been thinking of giving it up to see if that helps.

Jump to this post

I am taking the 4 mg of predisone and yes I am having pain in my arms and shoulders and especially my feet now. This is the strangest illness ever!!! I'm like you as far as I have always been anti medication and wanted to do it all natural. Unfortunately the predisone is the only thing that works. I am going to see a physical therapist on Tuesday who I am told specializes in PMR. I will let you know what I think about it. I can't imagine he would have anything to offer me, but will see. Getting in the Hot Tub gives me some relief, but I can't imagine all that heat would be good for inflammation. Your thoughts? And remission seems like will it ever happen.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 24, 2017
In reply to @johnbishop "Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking..." + (show)
@johnbishop

Hello @charlena, my symptoms are shoulder and arm pain/tingling. I'm a side sleeper and was waking in the middle of the night with my hands and arms feeling like they were asleep with numbness/tingling. The shoulder joints were painful but hard for me to describe how much pain. This started in August 2016 when my polymyalgia rheumatica came out of remission. The first diagnosis of PMR was in January 2007. I was put on 20 mg prednisone for both times. Also, I had hip pain along with the arm and shoulder pain/stiffness for the first bout of PMR.

I was able to taper down to 7 mg dosage by July 2007 but it took me until July 2010 to totally taper off of prednisone the first time. I had went back up to 10 mg by March 2009 and the rheumatologist had me taper 1 mg a week and if the pain came back I would go back up 1 mg for 3 days then drop again. From Jan 2010 to Jul 2010 I was going from 1 mg to 1/2 mg up and down until the symptoms went away July 17, 2010. It was hard for me to believe that 1/2 mg could make that much difference but it did. I also did not like splitting the 1 mg tablets. Now I'm having the same difficulty tapering off prednisone for this second PMR flare up.

@charelena did your husband see a rheumatologist or was is your primary care doctor? If not a rheumatologist, I think it would be a good idea to see a rheumatologist since they would have more experience with this condition.

Good luck - your husband is lucky to have you for an advocate. Keep asking questions of the doctors. The more you can learn, the better questions you can ask and hopefully the better care you can get for your husband.

John

Jump to this post

Hello @barbararene - you are right, PMR is the Frankenstein disease. I've had the old man walk since my early 50s in the morning until my stiffness gets better. I think it's not uncommon for PMR to start in hands, arms, & shoulders and show up later in the feet. I would contact your doctor or rheumatologist to discuss bumping up the prednisone a little. It also sounds like it could be a form of peripheral neuropathy which normally starts in the hands and feet. I don't believe prednisone will help with PN - I know it does nothing for my small fiber peripheral neuropathy but I only have the numbness/tingling and not any pain.

4 mg prednisone is a very low dosage. My rheumatologist started me on 20 mg in Jan 2007. I was able to taper down the dosage and get off of the prednisone in 2010 when my PMR went into remission.

Let us know when you find out anything.

John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Feb 24, 2017
In reply to @amkaloha "Hi Barbararene, I have been meaning to write for a few days and finally have a..." + (show)
@amkaloha

Hi Barbararene,
I have been meaning to write for a few days and finally have a few moments to myself! I was diagnosed with PMR on March 4, 2015 by my primary care doctor who is a D.O. and very much into natural healing as opposed to drugs. I remember when she said it, it looked like she had an epiphany! I guess she put it all together--my high inflammation markers and terrible pain across my shoulders and in my arms that wouldn't go away. I was already on Tramadol but that did not help this. She said the standard drug for PMR is prednisone but she did not want to put me on it because of my higher glucose level. Most often it was near 120 and I was not on any medication, just controlled it with diet, so she didn't want it to go higher or for me to have to take a drug.

There is a whole story as to how I came to the following, but I'll spare you the details and just tell you that we found that methylprednisolone did not raise glucose levels as much as regular prednisone. So, after she tried me on Methotrexate (the 'other' drug of choice) and I got so sick on just one dose of it, she put me on the methylprednisolone 4 mg. I have been on this dosage from the beginning and have tried a few times to go lower by taking 1/2 pill one day then the whole pill for a few days, etc. I could never get to a lower dosage without my pain coming back. In fact, at the 4 mg dosage I still have a little pain in my arms especially when I get up in the morning and sometimes in the late afternoon but I'm not into raising the dosage.

I was wondering if anyone on here could tell me how long it has taken for them to go into remission. I know everyone is different, but I guess I'd like to know if there is some light at the end of this tunnel??? And, Barbara, I'm with you, I drink some wine also but have been thinking of giving it up to see if that helps.

Jump to this post

Hi Barbara Rene' (@barbararene) - Think happy thoughts about PMR going into remission. My first occurance was in 2007 and it took my several years to get off of prednisone which was in July 2010. It went into remission and didn't rear it's ugly head until last August. So, I'm hoping it doesn't take me 3 years to get off prednisone and that it goes into remission forever. I've been focusing on eating a more healthy diet and have incorporated the nasty green smoothie for breakfast 4 to 5 times a week. I do know that diet and nutrition play a significant part in autoimmune illnesses. I started on my path after finding and reading The Wahls Protocol book by Dr. Terry Wahls. She has an amazing story of how she was able to significantly improve the symptoms of her MS - http://terrywahls.com/about/about-terry-wahls/. I thought it was just another diet book until I read a little more about her.

Here's hoping for happy thoughts that your PMR will go into remission very soon!

John

REPLY
1 reply
amkaloha | @amkaloha | Feb 24, 2017

Are all of you saying that after you go into remission you still can't get off prednisone? Also, when would you know you are in remission?

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Feb 24, 2017
In reply to @amkaloha "Are all of you saying that after you go into remission you still can't get off..." + (show)
@amkaloha

Are all of you saying that after you go into remission you still can't get off prednisone? Also, when would you know you are in remission?

Jump to this post

Hello @amkaloha - having PMR going into remission just means that all of the symptoms go away and you no longer need to take prednisone or whatever other medication was prescribed. Not sure why it goes away but I had the symptoms pain and stiffness in my shoulders, arms and hands for 3 years and then over that period kept tapering the dosage of prednisone until I no longer needed it - all under the doctors supervision.

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