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

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

lioness | @lioness | Jan 16, 2018
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

Fibromyalgia NewLife Outlook is a good group

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 16, 2018
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

Lioness, I take magnesium supplements also - two 200 mg tablets in the morning and two in the evening, 800 mg daily. In addition to the magnesium, I take two 5,000 IU capsules of D3 which helps with calcium absorption.

REPLY
lioness | @lioness | Jan 16, 2018
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

That's about what I take but also MSM as it's important I'm told,it's good to know what helps ,so good forum

REPLY
rolandhp | @rolandhp | Jan 17, 2018
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.

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Hi Sally my name is Roland & have had PMR since last March yes the pain is bad. Now I also started on 20 mg of prednisone per day. I am down to 7.5 mg/day. Now be very careful in tapering off the pred. John will tell you that tapering off this stuff is tricky. My Dr. told me that the patient knows best because we are the ones dealing with the pain. I would not tapper off the pred. more then 1 mg/month as your body will not produce any of the steroid you body needs because we are tricking our body by taking a synthetic drug that our body normally produces. So we are advised to take it slowly if not your pain will be back trust me. Good luck.

REPLY
sallygosse | @sallygosse | Jan 17, 2018
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

Thank you for your input Roland. Are you finding 7.5mg per day is enough to keep the pain away? I will definitely speak to my Dr. as I feel she is trying to taper off too quickly.

REPLY
rolandhp | @rolandhp | Jan 17, 2018
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

Well Sally there are no 2 bodies alike. I function very well on 7.5 mg now I still notice some discomfort in my shoulders & finger joints but it is nothing that I can't tolerate. I just go to the gym & work my discomforts out now that works for me. At the beginning of Feb. I will attempt to drop 1 more mg of pred. will see how that works it may or may not. This PMR is a strange autoimmune disease & no-one can put there finger on it even the best in our medical field. So like my Dr. told me only the patient knows how he or she feels & when to cut back, but cut back slowly to fast & it may trigger the PMR to return not that it can't or won't.

REPLY
libbylea | @helpforpmr | Jan 24, 2018
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 have been in physical therapy for six months. The hope was that it would strengthen my core muscles and relieve the all over muscle pain. It helped for a while as long as I was still on the prednisone. Once i was weaned off the medication, the pain crept back. My blood tests show acceptable levels of inflammation, but my muscles tell me otherwise. I refuse to go back on the prednisone as the extreme weight gain and the bone damage to my hip were not an acceptable alternative to the pain. I take pain meds when I am really suffering and have had to cut many activities out of my life. The depression this illness has created as well as the pain is ruining my "golden" years.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jan 24, 2018
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

Hello @helpforpmr, welcome to Mayo Connect. We are glad you found us. Connect is a good place to ask questions, share information and learn what other members with similar health problems are doing for treatments. I know it's probably not much comfort but there are a lot of us here with PMR. I don't think you ever get rid of the disease, it just goes into remission for whatever reason and can come back just as quickly. I had extreme weight gain with my first episode of PMR back in 2007 and blossomed to around 300+ lbs (330 if I was truthful). When I finally was able to taper off of prednisone in 2010 without the pain coming back I started working on changing my lifestyle a little focusing on eating healthier. I was able to get my weight down to between 230 and 235. My PMR came out of remission in 2016 and I had to go back on 20 mg dose of prednisone. I'm now at 2 mg and hoping to be off of prednisone in the next month or so.

Yes, it is depressing but I've found I have to take each day one at a time and really focus on controlling my weight. I have gained a little over 5 lbs and keep going up and down but I try to stay on top of it so that it doesn't get out of hand like the last time. Exercise is the key but you also have to not over do it so that it makes the pain worse.

You mentioned you have been in physical therapy. Are you doing any specific exercises to build up your core muscles?

I started working on changing my eating lifestyle after reading a book Wahls Protocol by Dr. Terry Wahls. She has MS and has a great story of how she treated the symptoms of her MS through cellular nutrition. You can read her story here if you want:
https://terrywahls.com/about/about-terry-wahls/
I'm tagging other members who also have PMR to see if they can offer any suggestions. @rolandhp, @jimhd, @sallygosse, @alanbruce, do you have any suggestions for @helpforpmr ?

John

REPLY
libbylea | @helpforpmr | Jan 24, 2018
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

Yes Sally, I can relate. I struggle every day but have vowed not to go back on prednisone unless I couldn't move. The weight gain from the medication was totally unacceptable. I had to buy larger clothes and when I looked in the mirror I saw a "fat" face that didn't belong to me. I will take a tramadol if the pain is really bad and I can't even move but I don't take it on a regular basis. Today is a good day and I have been able to move about within my home. Venturing out and participating in my normal activities (golf) is intermittent. Some days I can't even sit at a table to play cards because my buttox and thighs hurt so much. My hip MRI shows a slight tear in cartilage. I am convinced that this is the result of the prednisone. My rheumatologist constantly wants to administer steroid by injection but after trying that twice with no good result, I won't agree to that again. I am depressed and fed up with PMR.

REPLY
alan bruce | @alanbruce | Jan 24, 2018
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

JohnI have gained some weight with my PMR. What exactually do you think causes the weight gain. Eating more? Lack of activity? I am currentley on 8mg. Exercise nearly everday and dont eat lots

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