1. < Polymyalgia Rheumatica (PMR)

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

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mymolly57 | @mymolly57 | Jan 29, 2018
In reply to @mymolly57 "I'm not sure how to respond here to each message I received, so forgive me if..." + (show)
@mymolly57

I'm not sure how to respond here to each message I received, so forgive me if this is general. I don't recall the dose of Prednisone I took for poison ivy. It was years ago. But it made by heart go into vt, break out in a sweat, head pound and body shake. It was awful. It was one of those packs you take 4 than 3 than 2 than 1. I have noticed the 5 mil of Prednisone recently prescribed for OMR so far has indeed minimized the pain. I am moving better and today I don't feel the need to even take another pain aid like Tylenol. I couldn't get thru the morning before without that assistance and a hot shower. So far so good. My doctor wants me to increase it to 10 mil but since it's working so good at 5, I really don't want to take the chance.

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I am going to talk with her today. And your so right! No one knows our bodies like ourselves.

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lioness | @lioness | Jan 29, 2018
In reply to @helpforpmr "I was on prednisone for ten months after being diagnosed with PMR. After being weened off..." + (show)
@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around "the pelvic girdle" is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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A itchy rash suggest an allergy to meds or food .I had a itchy rash when the Dr.prescribed Norco for me ,so he stopped it and it went away.Even though the Vicoden is in the same class of med.As Norco I could take this

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libbylea | @helpforpmr | Jan 29, 2018
In reply to @helpforpmr "I was on prednisone for ten months after being diagnosed with PMR. After being weened off..." + (show)
@helpforpmr

I was on prednisone for ten months after being diagnosed with PMR. After being weened off of the prednisone, I felt ok for a short time. My symptoms have returned with some added problems. Pain around "the pelvic girdle" is debilitating. I am unable to walk and the fatigue is limiting my normal life. The prednisone may have been a magic medicine but I am more concerned with the dangerous side effects such as bone weakening and skin thinning. I do take pain medication when I must but life as I knew it has completely changed.

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I believe i am the person you were looking for in your quest to send a private message. libbylea

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sallygosse | @sallygosse | Feb 1, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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Can anyone tell me if they have developed Giant Cell Arteritis?    I understand that can happen with PMR.     I am on vacation and am fearful it is happening.      Thank you for any input.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 1, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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@sallygosse.

I'm tagging the following members who discussed Giant Cell Arteritis in a post to see if they can offer any input for you. @crhp194, @paulinef, @crhp194, @anya do you have any information you can share with @sallygrosse ?

Sally, can you share why you think you might have Giant Cell Arteritis?

Mayo Clinic has some information on their website for the symptoms of Giant Cell Arteritis here:
https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758
John

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libbylea | @helpforpmr | Feb 1, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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My doctors made me crazy about Giant Cell Arteritis. Several times I have had pain in my temples and called them in a panic. Once I even went to the Bascom Palmer eye institute emergency room. I hope you are able to rule this out by speaking with your Rheumatologist. When I questioned my doctor about the right protocol if I felt a symptom he said that he would put me on an increased dose of prednisone. As it is, none of my frightening incidents were the feared complication. Good luck and hope you don't have it.

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crhp194 | @crhp194 | Feb 1, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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From my limited experience, Sallygosse, giant cell arteritis does not have symptoms. It can show up,in blood tests but these tests are the same as for PMR. My giant cell arteritis was done is covered during open heart surgery for an ascending aneurism. The surgeon thought he saw evidence of. GCA, and the laboratory at Mayo confirmed that. Unlike PMR, I readily had no idea that I had GCA. My treatment is prednisone and methotrexate. Good luck to you. Carol

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sallygosse | @sallygosse | Feb 2, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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Thank you !   That makes me feel better.  I am out of the country until next week  and will see my dr.then.   I have only been on prednisone for one month,  at 20mg.   My thought was if I had developed GIA that the dose I am taking should take care of

it for now.   I have had pain in my temples then this morning woke up with jaw pain.   Nothing terrible, but enough to concern me.    Thank you again for replying!

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sallygosse | @sallygosse | Feb 2, 2018
In reply to @oldkarl "@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I..." + (show)
@oldkarl

@helpforpmr I have learned something this week. Hallelujah! Not for WHAT I learned but that I actually learned something. Anyway, I have had a sharp pain about halfway between my left shoulder point and my nipple. I learned just this week that this pain is probably one of the pain points of fibromyalgia. For years I have been blaming it on hATTRwt! Can you believe it? 60 doctors or so in the top clinics of America; all wrong.

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Thank you!

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beryl | @beryl | Jun 18, 2018

After ten years of having PMR I am now taking three Mgs of prednisone .....it can still be painful especially at night where I get a buzzing and I describe it as thousands of starburst of pain....
Two weeks ago I started taking turmeric capsules and although I didn't think this would do anything it lessened the buzzing and pain considerably....has anyone else had this sort of reaction after taking this .....Beryl

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