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

@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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Sally, I have had PMR since July 2017. Started on Prednisone 20 mg right away and reduced each month by 2.5 until I got to 10mg and started reducing by 1mg per month. This is a slow taper and recommended for me by Mayo.

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@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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How is this working for you @alanbruce ? did you have any pair reoccur?

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@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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so far all is well. I try to get lots of exercise, have my blood checked regularly and go to my rheumatologist at least quartely. i also go to a dietician to help watch my weight and blood sugar.

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@johnbishop

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived — where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it’s difficult for me to walk and move in general. I’ve had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I’m moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say — short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it’s pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it’s listed as a benefit. I’m not sure it helps with the PMR but I feel like anything I can do that’s more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John

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You sound just like me in the morning. I toss & turn all night (very painful & difficult) and when I get out of bed I almost have to crawl to the bathroom ! Wondering if I should see my orthopedist? I have osteoarthritis in my left hip (MRI showed) but he wasn’t concerned – this was about a year ago. I just wonder if my condition has deteriorated. I have been weaned down to 1 mg of prednisone and I take a 200 mg tablet of ibuprofen as well once a day just to settle my pain so I can struggle through yoga class. Been thinking about a bike. I also have a follow up appt. with RA on Tuesday – I’m assuming she’ll want to up my steroid dosage (to 5 mg) but I desperately want to stay off steroids. I guess I’m in denial that it really is the only cure for PMR : (

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@johnbishop

Hi @lioness, thanks for your private message. You mentioned you have the same diagnosis I have and you also have a L2 fracture so your thighs hurt all the time. You said that hot showers help but that is short lived — where the muscles attach to the bones ,knee ,hips,ankles in particular.

When I first get up in the morning it’s difficult for me to walk and move in general. I’ve had this old man PMR shuffle since I was in my 50s is what my wife told me ☺ I try to ride my recumbent exercise bike first thing in the morning for 30 minutes at least 4 or 5 days a week, not at a strenuous pace but enough just enough to be comfortable that I’m moving. It really helps loosen my joints and get around easier. I do a few stretching exercises also to try and get the other parts moving besides the legs. I like hot showers too but it is like you say — short lived.

I also have osteopenia and my doctor suggested I add 1200 mg daily of calcium. About six months ago I started taking 1 tablespoon of a Collagen Hydrolysate supplement that is water soluble so I mix it in a glass of water and it’s pretty tasteless. It helps with joints, ligaments and connective tissue. One of the side benefits is it good for nails. My wife was amazed with how her nails now grow and are stronger. I really never noticed that even though it’s listed as a benefit. I’m not sure it helps with the PMR but I feel like anything I can do that’s more natural is better than drugs. I would like not to have to take steroids which is why we all struggle to get off of that stuff.

Thanks for letting me bring your question back into the discussion!

John

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Also, there is so much negative news coming out about taking calcium. Even my RA said to reduce my dose there – I stopped altogether. So, I would say I’m in limbo due to fear of drug side effects. Trying very hard to keep that positive “vibe” going … but, sometimes, it’s very hard.

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@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.

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Lioness here I have PMR and fibro A while ago my shoulder pain,shooting pain,nerve pain down arms into hands I went on more Magnesium ,Fibro Malic was the one It stopped my pain into the arms,hands.We need more Magnesium then normal people. I’ve done a lot of research in the fibromyalgia group.Check out some fibro groups online

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@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.

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Fibromyalgia NewLife Outlook is a good group

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@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.

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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
@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.

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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

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@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.

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@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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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.

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@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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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.

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