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

@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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I have just been diagnosed with PMR, well sort of. The blood test for inflammation came back normal, although I have every symptom. It started about 5 months ago, when I started feeling really stiff and sore especially in the thighs and buttock area. It soon spread to my upper arms and neck. I began feeling such fatigue that I needed a nap in the afternoon. I have to admit to feeling frightened by these symtoms because I have always been extremely active physically. The Dr. said that we were going to treat it as PMR because it was all the classic symptoms, and so started me off on 20mg of prednisone. Within 3 days the relief was tremendous, and my good spirit was totally returning. I plan to start reducing in a week or so. Buy, last night I started getting pain in my hip, and this morning it is still there and quite bad. My question is: has anyone else had this? where all of a sudden a pain will resurface even while on 20 mg of prednisone? Thank you so much for any input

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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 @sallygosse, welcome to Mayo Connect. I am currently in my second episode of PMR. Both times I was started at 20 mg prednisone and the symptoms were better almost immediately after taking prednisone but they did come back if I tried to taper off the drug too fast. It took me three years to get off prednisone the first time and the PMR went into remission for six years. I’m about a year and a half into episode two and I’m currently at 2 mg prednisone. The last time I went back and forth between 1 mg and 1/2 mg for over six months until the PMR went into remission.

It might be good to discuss how you are doing with your doctor and see if he still thinks it’s PMR or if he thinks it would be good to see a rheumatologist.

Did your doctor give you a tapering schedule for the prednisone? Everyone is different and reacts different to tapering off of prednisone but a schedule gives you a starting point. I keep a daily log of the dosage and a few little ticks if my pain is worse than the day before. I try to tolerate a little pain when I reduce the dosage to see if it gets worse in a couple of days at the same dosage.

John

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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 so much for your input John. It is so comforting to have someone knowledgeable to talk to about this. I had never heard of it until 3 weeks ago. I also didn’t realize a rheumatologist would be the Dr. to speak to, as this isn’t a joint issue, but muscle. But I will ask my Dr. on the next visit in 2 weeks. The tapering off she gave me seems quite radical after reading from other people. I was told to taper by 5mg each week, down to 5 mg and see how I felt. I could move back up 5 mg if the pain returned. Im starting to feel as though this was not the best advise. Have you ever experienced pain return while still on the higher dose of 20 mg. ? it is not unbearable, like before, but definitely quite uncomfortable.
Sally

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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 @sallygosse, the good news is that there are a lot of us here on Connect with PMR. The bad news I don’t have to tell you ☺ It’s something I wouldn’t wish on anyone. I have no medical training or background so all I can do is share my experience with prednisone and my episodes of PMR. From talking with other members here on Connect, you can draw some similarities and some differences. I think that’s because each of us is a little different and may have different threshold levels for pain. I had my doctor prescribe 2.5 mg tablets of prednisone because 5 mg was too big of a jump for me and the pain came back. I have been tapering my dosage every 4 weeks. When I reached 5 mg for four weeks I dropped to 4 mg, then 3 mg and now at 2 mg. There have been several times where I have had to go back to the previous dosage for a few days or a week until I was able to reduce to the next step. It’s really different for each of us but I would not be afraid to discuss a plan with your doctor that works for you.

It’s really important to keep up with some kind of activity even if it’s not a lot. Whatever you can do helps.

P.S. – I don’t like quite uncomfortable either!

John

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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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@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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I also have Ostepenia and Dr wants me on calcium I will start the collegen hydrolysate maybe this is what’s missing.I do take Fibro Malic It has alot of magnesium and other herbs in it.This helps but it’s the thighs that are a problem .Thanks

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@johnbishop I also take calcium after breaking my pinky toe while putting on my compression stockings. Lots of pain now, can barely walk, but I keep trying.

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@oldkarl

@johnbishop I also take calcium after breaking my pinky toe while putting on my compression stockings. Lots of pain now, can barely walk, but I keep trying.

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Can you tape your toes together ,should help

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@lioness Right. The toe is healed up by now, but my foot and leg are still swollen. I believe it is from the right side heart failure. I have been expecting it to happen for some time.

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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.

Jump to this post

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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