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

@johnbishop Just wanted to say Hi have a great Labor day

REPLY
@lioness

@johnbishop Just wanted to say Hi have a great Labor day

Jump to this post

Hi @lioness! Hope you have a great and pain free Labor Day also.

REPLY
@johnbishop

Hi @dreamer38, are you able to try splitting the dosage so that you are taking some prednisone daily rather than every other day? When I was tapering off of prednisone I was taking 1/2 mg prednisone each day until I was finally able to taper off. I don't think regular pain pills work for PMR at least they never helped me or I would have never needed to start on prednisone. You could call your pharmacist and ask them and if you have enough pills until your rheumatologist gets back I would definitely do daily and not every other day.

Jump to this post

Thanks for such a fast reply, John. When you had a recurrence of PMR, did it start up again in the same manner?

REPLY
@dreamer38

Thanks for such a fast reply, John. When you had a recurrence of PMR, did it start up again in the same manner?

Jump to this post

Yes, it went into remission for 6 years and when it came back it was about 2 or 3 days before I realized it was not regular pain from over doing activity. Went back on 20 mg prednisone and the pain disappeared.

REPLY
@johnbishop

Hi @dreamer38, are you able to try splitting the dosage so that you are taking some prednisone daily rather than every other day? When I was tapering off of prednisone I was taking 1/2 mg prednisone each day until I was finally able to taper off. I don't think regular pain pills work for PMR at least they never helped me or I would have never needed to start on prednisone. You could call your pharmacist and ask them and if you have enough pills until your rheumatologist gets back I would definitely do daily and not every other day.

Jump to this post

Hello everyone, well after feeling good about getting down to 1mg I too have had a relapse, after being on 1mg for around 2 months and slight pain in my shoulders it has now turned and I have unbearable pain in my neck shoulder and arm. The pain is constant but I have burst of pain so bad I can hardly stand it. Is this normal, as previously I had the pain all the time and once I started on Prednisone it lessened to a slight ache. I have increased to 2mg but has not made any difference and the pain is wearing me down…don't really want to push the prednisone to a higher dose, can anyone recommend some other alternative. Pain relief is not making any difference.

REPLY
@lindapc

Hello everyone, well after feeling good about getting down to 1mg I too have had a relapse, after being on 1mg for around 2 months and slight pain in my shoulders it has now turned and I have unbearable pain in my neck shoulder and arm. The pain is constant but I have burst of pain so bad I can hardly stand it. Is this normal, as previously I had the pain all the time and once I started on Prednisone it lessened to a slight ache. I have increased to 2mg but has not made any difference and the pain is wearing me down…don't really want to push the prednisone to a higher dose, can anyone recommend some other alternative. Pain relief is not making any difference.

Jump to this post

@lindapc, I'm sorry to hear about the new pain in the neck, shoulder and arm. Is the pain just on one side for the shoulder and arm? I would talk to your doctor to see if it may be something else like a pinched nerve. My PMR has generally been all over the body. Hoping some other members can share their experience with you. There is another discussion which may be helpful for the pain you are describing.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY
@johnbishop

Yes, it went into remission for 6 years and when it came back it was about 2 or 3 days before I realized it was not regular pain from over doing activity. Went back on 20 mg prednisone and the pain disappeared.

Jump to this post

Did your rheumy prescribe the 20 or did you just take it. Again, thanks for such a fast reply.

REPLY
@dreamer38

Did your rheumy prescribe the 20 or did you just take it. Again, thanks for such a fast reply.

Jump to this post

My rheumatologist prescribed the 20 Mg dosage when I was first diagnosed.

REPLY
@dreamer38

Hi @beryl, I, too, am having a return of PMR and the smiles and happiness are getting kinda thin!! My GP says that it’s only been since last Oct/18, but to me, it’s been sooooo long! I’d never heard of this awful disease…until I got it!!

Jump to this post

Hi dreamer we just have to do our best for the people round us and try to smile , but I is hard to live with and there never seems to be a pattern that you can see anyway…..we just need it to go away …..all the best Beryl

REPLY
@johnbishop

My rheumatologist prescribed the 20 Mg dosage when I was first diagnosed.

Jump to this post

Hi John this is Roland it has been a while since I have been on but have been following all the post. Now to all who have PMR like you it is a struggle well not exactly. To all who follow the Mayo web site on PMR. first of all I have had it for 3.6 years. The symptoms are all the same along with my hips, shoulders, wrist & fingers. I started on 20 mg of prednisone down to 10 then 5 an then well it is how do you feel in decreasing the dosage. Well it is up to how one's feel's I am still on 2.5 mg. & depending on the weather it could be 5 mg. Now to all the DR's does not know how much discomfort you can tolerate so It is up to the individual on how much pred. you should take, now my pain threshold is moderate so I can tolerate some discomfort if not more. Now I am 78 yrs old I still bicycle, go to the gym, motorcycle & yes in the winter downhill ski. I refuse to let this this autoimmune disease put an end to my life. Folks with PMR don't let it get you down like it did me in my early stages. Give it hell & keep it going. OH by the way hips are ok but shoulders, wrist & 8 fingers & neck still an issue but I will over come it I hope. God bless everyone with the issue.

REPLY
@rolandhp

Hi John this is Roland it has been a while since I have been on but have been following all the post. Now to all who have PMR like you it is a struggle well not exactly. To all who follow the Mayo web site on PMR. first of all I have had it for 3.6 years. The symptoms are all the same along with my hips, shoulders, wrist & fingers. I started on 20 mg of prednisone down to 10 then 5 an then well it is how do you feel in decreasing the dosage. Well it is up to how one's feel's I am still on 2.5 mg. & depending on the weather it could be 5 mg. Now to all the DR's does not know how much discomfort you can tolerate so It is up to the individual on how much pred. you should take, now my pain threshold is moderate so I can tolerate some discomfort if not more. Now I am 78 yrs old I still bicycle, go to the gym, motorcycle & yes in the winter downhill ski. I refuse to let this this autoimmune disease put an end to my life. Folks with PMR don't let it get you down like it did me in my early stages. Give it hell & keep it going. OH by the way hips are ok but shoulders, wrist & 8 fingers & neck still an issue but I will over come it I hope. God bless everyone with the issue.

Jump to this post

Hi Roland @rolandhp, It's great to hear you are doing OK and still managing our old friend Mr. Nasty. Like you say, it can be a challenge but you can't let it get you down. You have to meet it one day at a time, one step at a time. Wishing for a pain free day for all my PMR friends.

REPLY
@lindapc

Hello everyone, well after feeling good about getting down to 1mg I too have had a relapse, after being on 1mg for around 2 months and slight pain in my shoulders it has now turned and I have unbearable pain in my neck shoulder and arm. The pain is constant but I have burst of pain so bad I can hardly stand it. Is this normal, as previously I had the pain all the time and once I started on Prednisone it lessened to a slight ache. I have increased to 2mg but has not made any difference and the pain is wearing me down…don't really want to push the prednisone to a higher dose, can anyone recommend some other alternative. Pain relief is not making any difference.

Jump to this post

Hi Linda,
I never had the burst of pain you are describing. I will tell you, however, that my rheumy at Johns Hopkins put me on 200 mg. celebrex to help with the pain in tapering off pred. I have now been off prednisone since April and I'm about 90% pain free most days.I now take 100 mg every other day to keep the PMR under control. I wish you the best and prayers your way to find comfort.

REPLY
@kdmorris

Hi Linda,
I never had the burst of pain you are describing. I will tell you, however, that my rheumy at Johns Hopkins put me on 200 mg. celebrex to help with the pain in tapering off pred. I have now been off prednisone since April and I'm about 90% pain free most days.I now take 100 mg every other day to keep the PMR under control. I wish you the best and prayers your way to find comfort.

Jump to this post

Hi kd @kdmorris, thank you for your reply and information. John suggested that it may be a pinched nerve but I have no symptoms of that, no pins and needles or numbness, it's just intense pain in the muscle and my arm is so sore to press the muscle and bone. If it is nerve problem they say with rest it will settle down, so will see how this goes, I just don't want to be taking pain relief all the time as it affects my stomach. I am so happy for you that you are off prednisone, I will try and stay on the 2mg and hope this settles but if no luck in the next week will have to increase to 5mg maybe. Thank you once again for your wishes and prayers.

REPLY
@johnbishop

My rheumatologist prescribed the 20 Mg dosage when I was first diagnosed.

Jump to this post

Hi John, my pain was really bad today in wrists, fingers, shoulders & hips so I took an extra half a tablet today, the day I was supposed to be off the Prednisone. Doctor still not back from holidays. Did you ever do this? Thanks again!

REPLY
@kdmorris

Hi Linda,
I never had the burst of pain you are describing. I will tell you, however, that my rheumy at Johns Hopkins put me on 200 mg. celebrex to help with the pain in tapering off pred. I have now been off prednisone since April and I'm about 90% pain free most days.I now take 100 mg every other day to keep the PMR under control. I wish you the best and prayers your way to find comfort.

Jump to this post

Hi kdmorris, is the Celebrex that you are taking in place of Prednisone? I’m trying to taper off Prednisone, but the PMR seems to have returned! Any helpful info? Thanks.

REPLY
Please login or register to post a reply.