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

@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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@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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@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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@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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@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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@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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@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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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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It sounds like fibromyalgia and you can manage ir in some ways which I did it ten years ago, saying goodbye to it. Take care of you

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@ewada

It sounds like fibromyalgia and you can manage ir in some ways which I did it ten years ago, saying goodbye to it. Take care of you

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Hello @ewada, welcome to Connect. Thank you for sharing. Are you able to tell us a little bit more about yourself and how you were able to manage your treatments?

I've had two episodes of PMR but thankfully it went into remission both times after being treated with prednisone. I was able to taper off of prednisone after 3 years the first time and about a 1 and half years the second time.

John

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@ewada

It sounds like fibromyalgia and you can manage ir in some ways which I did it ten years ago, saying goodbye to it. Take care of you

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Exactly. I refused the injection and the pills. I am not saying that I do not have body pain, but I treat it with walking. I truly believe they misdiagnosed me with RA.

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My sister has had PMR for two years. Started out at 40 mg of prednisone. Now down to 1mg but pain is getting bad. Her neck is one of her sorest spots. Living with chronic pain is so hard.
She has seen rheumatologists in her area (Northern MN) but not a lot of help. Does anyone know of a doctor at the Mayo in Rochester that deals well with PMR?

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