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

@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?

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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

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@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!

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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.

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@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?

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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!!!!

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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

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@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!

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@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

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@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!

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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…..

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I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He’s gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it–skin is so very thin he bleeds at the slightest touch! It’s become a joke in our family–I’ll just buy all new towels and sheets when he’s through the tunnel; don’t go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about 3 years before I was able to taper off, my main side effect was weight gain and fluid retention. My PMR went into remission for about 6 years and came back August of last year so I was back on 20 mg prednisone. I have been able to taper down to 10 mg but am struggling a bit to go below that. Knowing what my side effects were the first go around has given me extra incentive to work on not gaining more weight and trying to exercise a little more.

Mayo Clinic has some information on the major, minor and unknown possible side affects here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2
Drugs.com also has a comprehensive list of side effects here:
https://www.drugs.com/sfx/prednisone-side-effects.html
Hopefully others will share their common side effects.

John

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@johnbishop

Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about 3 years before I was able to taper off, my main side effect was weight gain and fluid retention. My PMR went into remission for about 6 years and came back August of last year so I was back on 20 mg prednisone. I have been able to taper down to 10 mg but am struggling a bit to go below that. Knowing what my side effects were the first go around has given me extra incentive to work on not gaining more weight and trying to exercise a little more.

Mayo Clinic has some information on the major, minor and unknown possible side affects here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2
Drugs.com also has a comprehensive list of side effects here:
https://www.drugs.com/sfx/prednisone-side-effects.html
Hopefully others will share their common side effects.

John

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Thanks John.  That's funny. . .side effects have got to be so different for each individual.  Ron has not gained any weight nor the fluid retention.  I hope others will share their experiences because the effect I wrote about are "killing us". . .

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@johnbishop

Hello @rinron, when I was first diagnosed with PMR and was put on prednisone for about 3 years before I was able to taper off, my main side effect was weight gain and fluid retention. My PMR went into remission for about 6 years and came back August of last year so I was back on 20 mg prednisone. I have been able to taper down to 10 mg but am struggling a bit to go below that. Knowing what my side effects were the first go around has given me extra incentive to work on not gaining more weight and trying to exercise a little more.

Mayo Clinic has some information on the major, minor and unknown possible side affects here:
http://www.mayoclinic.org/steroids/art-20045692?pg=2
Drugs.com also has a comprehensive list of side effects here:
https://www.drugs.com/sfx/prednisone-side-effects.html
Hopefully others will share their common side effects.

John

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I have experienced the thin skin and easy bruising but wasn’t sure it was a side effect of prednisone. I do wear socks to bed after an exciting ride to the ER from rubbing my feet together and nicking a vein close to the surface of the skin. Good thing I woke for my old man trip to the bathroom which is when I noticed blood all over the floor while I’m turning in circles to see where it’s coming from. I didn’t feel anything due to the neuropathy in both legs and feet. It is funny looking back on it but wasn’t funny when it happened. I had attributed it to what I “believe” caused my small fiber peripheral neuropathy – many years in my 40s and 50s taking lisinopril for high blood pressure.

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@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He’s gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it–skin is so very thin he bleeds at the slightest touch! It’s become a joke in our family–I’ll just buy all new towels and sheets when he’s through the tunnel; don’t go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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Yes, weight gain is the worst for me. I feel like i just can’t get out of my own way! And I’ve developed lymphodedema which may or may not be due to the prednisone. I know swelling is one of the effects, so why not lymphodema? I also have fluid buildup on the retina of my left eye. Wondering if this is due to the same thing????? Not a good drug! I take 4 mg a day and want so badly to lower that.

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@rinron

I think this will be introducing a new topic, but I dont know where else to do it. My husband has been dealing with PMR for two years. He’s gotten down to 3 mg of Prednisone just recently. The one issue I have not seen commented on in this group are the side effects of being on Prednisone. Yes, everyone wants to get off of it, but no one says why. . .Well, I can tell you why we want my husband to be off of it–skin is so very thin he bleeds at the slightest touch! It’s become a joke in our family–I’ll just buy all new towels and sheets when he’s through the tunnel; don’t go outside without a longsleeve shirt on, and so on. And the touchy temperament; oh my. . . Can some of you pls share with us your experiences with side effects ??

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Hello @amkaloha, so sorry for your struggles with the drug. Have you been able to talk with your doctor about the possible side effects or if there is an alternative drug or treatment? I would ask the doctor if it’s possible to taper the prednisone to try and get off of it.

Hoping you find some answers…

John

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