Share this:
barbararene
@barbararene

Posts: 45
Joined: Feb 14, 2017

Polymyalgia rheumatica

Posted by @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

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 am taking the 4 mg of predisone and yes I am having pain in my arms and shoulders and especially my feet now. This is the strangest illness ever!!! I’m like you as far as I have always been anti medication and wanted to do it all natural. Unfortunately the predisone is the only thing that works. I am going to see a physical therapist on Tuesday who I am told specializes in PMR. I will let you know what I think about it. I can’t imagine he would have anything to offer me, but will see. Getting in the Hot Tub gives me some relief, but I can’t imagine all that heat would be good for inflammation. Your thoughts? And remission seems like will it ever happen.

@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

Hello @barbararene – you are right, PMR is the Frankenstein disease. I’ve had the old man walk since my early 50s in the morning until my stiffness gets better. I think it’s not uncommon for PMR to start in hands, arms, & shoulders and show up later in the feet. I would contact your doctor or rheumatologist to discuss bumping up the prednisone a little. It also sounds like it could be a form of peripheral neuropathy which normally starts in the hands and feet. I don’t believe prednisone will help with PN – I know it does nothing for my small fiber peripheral neuropathy but I only have the numbness/tingling and not any pain.

4 mg prednisone is a very low dosage. My rheumatologist started me on 20 mg in Jan 2007. I was able to taper down the dosage and get off of the prednisone in 2010 when my PMR went into remission.

Let us know when you find out anything.

John

@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

Hi Barbara Rene’ (@barbararene) – Think happy thoughts about PMR going into remission. My first occurance was in 2007 and it took my several years to get off of prednisone which was in July 2010. It went into remission and didn’t rear it’s ugly head until last August. So, I’m hoping it doesn’t take me 3 years to get off prednisone and that it goes into remission forever. I’ve been focusing on eating a more healthy diet and have incorporated the nasty green smoothie for breakfast 4 to 5 times a week. I do know that diet and nutrition play a significant part in autoimmune illnesses. I started on my path after finding and reading The Wahls Protocol book by Dr. Terry Wahls. She has an amazing story of how she was able to significantly improve the symptoms of her MS – http://terrywahls.com/about/about-terry-wahls/. I thought it was just another diet book until I read a little more about her.

Here’s hoping for happy thoughts that your PMR will go into remission very soon!

John

Are all of you saying that after you go into remission you still can’t get off prednisone? Also, when would you know you are in remission?

@amkaloha

Are all of you saying that after you go into remission you still can’t get off prednisone? Also, when would you know you are in remission?

Jump to this post

Hello @amkaloha – having PMR going into remission just means that all of the symptoms go away and you no longer need to take prednisone or whatever other medication was prescribed. Not sure why it goes away but I had the symptoms pain and stiffness in my shoulders, arms and hands for 3 years and then over that period kept tapering the dosage of prednisone until I no longer needed it – all under the doctors supervision.

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

@jchatchett

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Jump to this post

Hello @jchatchett, I’m so sorry to hear about the side effects and the pain. I know it can seem overwhelming at times. I see you mentioned you are at 9 mg dosage and go down every 4 weeks. Did your doctor give any instructions about if the pain gets bad again to go to the previous dosage? I would talk with the doctor about the pain. My first occurrence of PMR I was put on 20 mg and after awhile he gave me a schedule to try tapering off of prednisone. He also told me it would be difficult and it was. It took me 3 years before the pain went away enough I didn’t need the prednisone. The last of those three years was bouncing back and forth between 1 mg to 1/2 mg dosage until I finally stopped taking the 1/2 mg dosage and the pain was gone.

Have you told your doctor about the side effects you are experiencing? My rheumatologist told me that PMR was the arthritis everywhere disease. I’m guessing that was the easiest way for him to explain it at the time. There is a lot of information that describes it along with symptoms, treatments, etc..

Mayo Clinic has some information here – http://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/definition/con-20023162.

NIH page has some good information also – https://www.niams.nih.gov/health_Info/Polymyalgia/default.asp

Hoping you can find some relief for your pain.

John

@amkaloha

Are all of you saying that after you go into remission you still can’t get off prednisone? Also, when would you know you are in remission?

Jump to this post

Thanks for the reply. I’m wondering when you know you should start tapering off the prednisone. I have been on 4 mg since June 2015. I have tried taking half a pill but have pain and resort to going back to the whole pill again. If you still feel pain when you cut down, does that mean you are not in remission? Or are there other indicators? And should you suffer through some pain when you taper down? I’d really like to get off this prednisone.

@jchatchett

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Jump to this post

jchatchett, have you checked out other things that might be causing what you feel are side effects of prednisone? E.g. hair falling out can be an indicator of hypothyroidism often missed by MDs Also, magnesium helps leg cramps and a-fib, but you need a liquid kind like Re-Mag so that your body can absorb it. You can read more about liquid magnesium on Dr Carolyn Dean’s website if you are interested. I know exactly what you are going through, as I also pray for remission and stopping the dreaded prednisone. Good luck to you.

@amkaloha

Are all of you saying that after you go into remission you still can’t get off prednisone? Also, when would you know you are in remission?

Jump to this post

You mentioned that you were on 4 mg dosage or prednisone and when you try taking a half of a pill (2 mg?) that the pain is back. Is this correct? If this is the case, I would talk with your doctor to see if they can write a prescription for the 1 mg prednisone. It may be more expensive but it’s easier split the 1 mg tablet then you have a 1/2 mg dosage so could go from 4 mg down to 3-1/2 mg. I would tell your doctor you are having difficulty tapering the dosage and ask if they have any suggestions on a titration schedule. My Mayo rheumatologist helped me when I was having difficulty. It’s something you just have to keep working on. Also, are you able to do any hand, shoulder, arm exercises? They really will help even if you have a little pain.

Hoping for some relief for you and that you will be able to taper off of prednisone.

John

@jchatchett

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Jump to this post

I had PMR and was on prednisone for 18 months. The side effects were terrible, especially the weight gain. I did not experience any difficulty tampering off. I started at 20 mg and went down to 2 mg. Fortunately I have been in remission for over 3 years. Please check with your physician after tapering off. You may not be ready. I do recall the the awful pain before I started on prednisone.

@amkaloha

Are all of you saying that after you go into remission you still can’t get off prednisone? Also, when would you know you are in remission?

Jump to this post

Getting off of the prednisone is difficult. I agree w John, that you have to do what works for you and be your own advocate. I went back to my rheumatologist and said I have to go back up on the prednisone bc I can hardly move. She wants me off of it, but it evidently is not the right time. I talked w an older physician that I work with and he said not to worry about the side effects when you are at a lower dose of 5 mg, that there should be few side effects at that dose. I really should go back up from 5 to 7mg, but I like you just want off of this stuff. I am surprised that I have less pain in my shoulders and arms and hips, (I say less pain, not no pain).
Most of my pain has now moved to my feet. Especially the sides of my feet, makes it difficult to walk, but I go to work for 1/2 a day every day. I say, we all have to keep moving, and I agree w John that we have to find the exercise we can to help w the stiffness.
Ugh. This is terrible stuff! Prayers, Exercise, and being positive. We got to do it!!!!

I do the hand exercises from Mayo link below and some of the things from the second link. I have trouble finding time to walk so I have recumbent exercise bike with large seat and pedals (it’s a recumbent bike, elliptical combination – I just don’t use the elliptical part). I use it 4 to 5 times a week for 30 minutes at a time when I first get up. I find doing it first thing helps with the stiffness.

Here are some easy to do hand exercises for people with arthritis that I think also help for those of us with PMR;
http://mayocl.in/2lYSXKu

Here are some exercises for people with PMR – I would just try to find something that is easy for you to do. Lot’s of recommendations and choices here.
http://bit.ly/2m3zCIL

One day at a time, one step at a time ☺

John

@jchatchett

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Jump to this post

@jhatchett. This is a suggestion for you. Both myself and my sister-in-law had been diagnosed with PMR year 2013.
I personally had it for almost three years. It’ an autoimmune disease caused by inflamation somewhere in the body which
Doctors can only tell by a high CBC or a high sedimentation No. Mine was 14 at the time. But here’s the the part I want you to know.
In checking with a neurosurgeon for back pain It was discovered that we both had stenosis of the cervical neck and we both had
Surgery. Arthritis and Spurs were squeezing the spinal cord causing all the symtoms you describe. I now have no general body
Pain but I still have my back pain because of a separated SI joint for which I need more Surgery. That won’t be until I feel my neck
Is completely healed which will take time and more therapy. You would need to see a very good Brain and Spine Neurosurgeon!
For X-rays to be sure this is not your problem. I feel since this was two of us PMR may be a misdiagnosis. Worth a try!
Feel better. From Daisybud12. PS. Joan lives in Reading, Pa I live in No. Florida

@jchatchett

I have PMR and was put on 20 mg of prednisone. I felt great at first. Then the side effects of prednisone kicked in. I feel miserable. Every time I get to come down a mg. I have all the symptoms again. I feel nauseated and I have AFib really bad. I love my doctor but dont always feel like he understands the auto immune. I have cramps in my feet legs, kidneys and below my shoulders. It hurts so bad some times i have to cry. My hair fallls out in clumps when they lower it. I’m on 9 mg and I go down every 4 weeks. Remission please come . My hands hurts really bad and some times I can’t hold a plate. PRM doesnt get the recognition it needs to help the people who has it. Every time I go to the rheumatologist they have material on everything but PMR. I will pray for each of you every night and hope we all go into Remission. God bless!

Jump to this post

This is most interesting. My husband had a neck injury many years ago. It might be worth checking into as his rheumatologist is not 100% sure on the PRM…..

Please login or register to post a reply.