Polymyalgia rheumatica

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

@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
@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.

Liked by anniegal

REPLY
@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
@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

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
@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
@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
@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
@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
@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
@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

REPLY
@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 haven’t been writing lately but your story is so similar to my own. I am still on prednisone (4 mg) and have tried often to ween off of it, but can’t. When I tried to go down to 3 mg, the pain came back with a vengence! I also take tramadol twice a day and am told I can use 3 times a day but don’t. I also have gained so much weight and was overweight before I took it. When I try to lose some of the weight nothing works. I have other things going on also — arthritis in my knees, neuropothy in my legs and feet and lymphedema. Because of all this I can’t manage getting in and out of any car and am now home bound. I am so depressed also but keep on keeping on!

REPLY
@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

@alanbruce, I think eating more is part of it but it’s also because prednisone causes the body to retain sodium and lose potassium. I think being on prednisone actually makes you more hungry than you would normally be. More info/details on these two links:
https://www.livestrong.com/article/349434-why-do-people-gain-weight-on-prednisone/
https://www.drugs.com/slideshow/prednisone-faq-1088
I have tried to change my lifestyle from live to eat to eat to live…which is not too easy to do for me. So I focus on no fast foods, limiting snacks and eating more veggies to keep my weight gain to a minimum. I have been making “green” smoothies for my breakfast 3 or 4 days a week using some basic smoothie recipes I got out of the Wahls Protocol book. I mix up the greens but normally have a handful of spinach, kale, arugula or spring greens along with blueberries or whatever berry type fruit I have on hand. Frozen fruit is just as good as the fresh for the smoothies. I add a cup of water or coconut water that has no added sugar. 8 oz of coconut water gives you more potassium than the average banana (or so I have been told). I was surprised that a glass of the smoothie will hold me until lunch time.

What has helped me a lot is weighing myself every morning when I take a shower. When I was in Weight Watchers they always said that is a no no because you can get depressed but I found that if I know I’m up a pound I have an incentive that day to cut back a little more and be extra careful. I think my first round with PMR I probably gained 30 to 40 lbs. This time I’ve kept the weight gain under 10 lbs and going between 5 and 8 pounds up and down.

I’m sure it’s different for everyone and you just have to find some system that works for you. Exercise is a big help though.

John

REPLY
@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

John I had the tingling in arms ,hands At night instead of laying on a pillow I just lay on bed ,when I removed the pillow tingling stopped.Try it see if it works for you

REPLY
@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 John yes thats what I take only 1000 mg magnesium,Vit D3 and calcium I understand we need more of these minerals also I don’t sleep on a pillow ,this stopped the nerve pain in arms,hands try it ,see if this helps you.

REPLY
@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

question: i have both RA and PA yet for some reason i do not have stiffness when waking up. I do appreciate this but curieosity opens it’s eyes. The stiffness seems to be expected. I do have much stiffness when the pain, swelling and cramping comes into being which seems to be happening much more often as time goes bye.

REPLY
Please login or register to post a reply.