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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Thanks Barbara so much for sharing your story I have just read it out to my husband and he said omg that sounds exactly like you babe !! I am 57 and had just this last week been diagnosed with PMR I was extremely lucky as my doctor was switched on and started doing the blood tests etc as soon as I mentioned the symptoms I was having I am now on 10mg prednisolone and getting it under control. Thanks heaps for the information I now don’t feel so confused about it all regards Lynn from South Australia

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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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I’ve just kept up walking 30 minutes, 2x day. No pain from that. I’m trying to ease back into pilates – where I can get muscle stiffness, but not the same pains as PMR before I started taking prednisone.

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I was diagnosed with PMR based on symptoms and blood tests a few months ago. Started on 15 mg. prednisone. But had bad headaches. So doc upped my dosage to 40 mg in case I have temporal ateritus. Then did biopsy two weeks ago to rule that out so now down to 15 mg again. Will taper down for next few months. Hopefully, then remission. My problem now is so much pain from the biopsy at the site. Not infected but extremely tender to the touch.

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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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Welcome to Connect Lynn, @lynngweeney,

Thank you so much for sharing your story. May I ask what symptoms you had? Did the doctor tell you how long you have to be on Prednisone? We look forward to getting to know you.

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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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I had pain in arms and hips. My hands had so much pain, I couldn’t hold a plastic plate. I felt like someone was braking my bones. I have been on steroids July was a year ago. Today I ‘m on prednisone 5. I at 5 and when you get to 5 they do a test to check for inflammation. I took a really bad fall so they have to wait until I am free of inflammation. I was told that when you get to 5 you have to be careful so your adrenalin doesn’t shut down your organs. I know it’s scary especially when you start. I felt great but over time not so good. It has really helped. I was told some people never ever have this problem. I’m not sure which way I will go but I’m a positive person. Having cravings for sweets are the worst. I have gained 15 pounds. My doctor said it will come off when I am finished. The wait comes to your waist up. Good luck!

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@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

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My primary care physician diagnosed me. Then sent me to s rheumatologist.

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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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I am 1 mg of prednisone currently. I know it is not a high enough dose, but I can manage. I say it’s not a high enough dose bc I still have a lot of pain in my neck and shoulders, especially in the mornings getting out of bed. I go to work at 5:30 am everyday, so I take 1/2 a tramadol at 5am hoping it will help a bit, then I take my 1 mg of tramadol.
I am walking about 20 minutes a day and trying to do a few stretches. I go see the rheumatoid Dr tomorrow and I will see what my inflammation levels are. I had lab drawn yesterday. Some days I feels really good and think, oh my, I’m healed and then the next day comes, and I’m like not!
I do have some fatty pockets around my lower neck and my research tells me it is from the prednisone. Each time I have tried to stop the 1 mg of prednisone, I can hardly move or walk and the bottoms of my feet feel a lot of pain.
What a mystery this illness is!

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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 @barbararene, I can relate to your morning pain and stiffness. I get up at 5 every morning and spend about 30 minutes on a recumbent exercise bike so I can work out the stiffness in my legs. I need to do some more stretching exercises also but haven’t quite got there yet. I’m currently on 3-1/2 mg of prednisone and trying to taper 1 mg a month. Exercise is an important part of keeping it from getting worse. You just don’t want to over do it.

The weather has a lot to do with the pain and stiffness this time of year for me. Does the weather affect your pain and stiffness?

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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Hi @bartbararene well being on 1 mg/day is not bad at all I am waiting for the day that I can drop to that dose. I came down with PMR back in March of this year. Started with 20 mg/day now I am down to 10/day. I take 5 mg in the AM & 5 mg in the PM. I am doing real good with that dose I do still feel the discomfort but I function very well & do not let the discomfort bother me. I have tried to drop my dose but the pain accelerates so I am sticking to 10 mg/day for now. Yes as John B said exercise is very important especially in the morning it helps you to get going. About the only thing I still cannot do is playing golf because of the shoulder & wrist discomfort other then that I still am able to do my gym work. Hang in there they say that there is light at the end of the PMR tunnel.

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Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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@paulinef

Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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I have been on metotroxate for a year and really have had no problems. You only take it once a week and on that day, I sometimes feel tired but nothing that can’t be handled. I have giant cell arteritis which is an autoimmune disease similar to yours. I wouldn’t worry about adding it as the med is likely to help inflammation.

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@paulinef

Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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I am currently on methotrexate and have not had any problems I am aware of. I only take it once s week – 7 tablets. It works in conjunction with my cimzia and seems to be making a difference in my inflammation.

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@paulinef

Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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Thank you for the reassurance – I will probably decide to go on the methotrexate if my current dose of prednisone isn’t helping in another month’s time when I have more bloodwork. Meanwhile, I am monitoring the headaches that I have started to experience so hoping that isn’t the onset of giant cell arteritis.

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@paulinef

Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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Good luck to you, Paulinef! Certainly hope everything works out for you!

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@paulinef

Hope you manage to get the prednisone dosage reduced over the next few months. I started on 15 mg last winter and got down to 8 mg a month ago but the symptoms all started again so currently back on 9 mgs for another month. Still experiencing stiffness though in shoulders and hips so rheumatologist suggested that I start taking Methotrexate to help reduce the prednisone more effectively. Has anyone been on Methotrexate? I am loathe to go on another medication so am holding off for the time being.

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been on methotrexate for over 7 years. now have serious anemia (which methotrexate can do this) so now i am off methotrexate. it was good when i was on it.

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