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

@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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@paulamhp

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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Hello @paulamhp — Welcome to Connect. I also have PMR but it's now in remission. I was diagnosed at Mayo Clinic Rochester by Dr. Thomas Osborne…really good experience for me to have him for my rheumatologist. I think pretty much any doctor in Rheumatology department would be OK as they work as a team when dealing with difficult cases. Here's a link with all of the ones available in Rochester:

Rheumatology – Doctors
https://www.mayoclinic.org/departments-centers/rheumatology/minnesota/doctors

It may just be a matter of increasing the dosage by 1 mg prednisone. I've had 2 occurrences of PMR and when tapering off of prednisone both times I bounced back and forth between 1 and 2 mg dosage then between 1 mg and 1/2 mg until I was finally able to stop taking it and the pain didn't come back. Dr. Osborne was the one that really helped me come up with a tapering plan when I first was diagnosed with PMR.

John

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@paulamhp

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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Dear Texas freedom , sorry your sister has this very debilitating thing called PMR……I think John has put it in a nutshell ….

My name is Beryl and I have been unlucky enough to have PMR for a long time as has John…

I am on a low dose now and am doing so much better…..I think if you can follow Johns advice
you will be looked after very well and will feel very much more in control of the situation……good luck

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I was just diagnosed withPMR today. I am 68 y/o. Came on over night. Been good to read how you all have done. It really helps

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@susie1950

I was just diagnosed withPMR today. I am 68 y/o. Came on over night. Been good to read how you all have done. It really helps

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Hi @susie1950, welcome to Connect. I too have PMR but it is currently in remission. I'm glad you found this discussion. There are a lot of members that have shared their PMR story and experiences.

Did your doctor or rheumatologist start you on prednisone?

John

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I have the same diagnosis along with heart issues. I have the same thing happen to me when I go below 10mg of prednisone. I drink wine every night, 1 or 2 glasses. The pain in my hips and neck is unbearable at times.

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@johnbishop

Hi @susie1950, welcome to Connect. I too have PMR but it is currently in remission. I'm glad you found this discussion. There are a lot of members that have shared their PMR story and experiences.

Did your doctor or rheumatologist start you on prednisone?

John

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Yes. 40mg for 2 days than dropped me to 25mg today. I woke up stiff again. We will see how I do on 25mg. Having all this background from others sharing makes it less scary. I am very active and not being able to go mow my lawn is hard on me

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