1. < Polymyalgia Rheumatica (PMR)

PMR Anyone?

Posted by olegraymare @olegraymare, Jan 4, 2018

I was diagnosed with polymyalgia rheumatica about a year ago. I WAS a very active 69 year old female all of a sudden, not being able to get out of bed on her own and having severe hip flexor pain. As is customary, after waiting 3 months to see a rheumatoid arthritis doctor, she administered the C-reactive protein test and I was VERY high. So, she diagnosed me with PMR and prescribed 15 mg of prednisone. I don't like taking meds (as most of us don't), but I was in pain and had no quality of life. I'm a swimmer and could hardly dog paddle ! One year later, I have been weaning off the 15 mg down to 1 mg. My RA said that now it's a matter of determining if I have PMR or arthritis ... so, she prescribed 7.5 mg of meloxicam for a month. I will say my shoulder pain seems better, but my hip flexors are awful !! I don't want to go back on steroids - the devil drug. I would like to get to the "crux" of what is CAUSING my inflammation??? No doctors seem to address that? What would be my next step? A nutritionist? I am leary of taking supplements, as well. Thank you for any help or sharing your experience. Weird disease ... I just want my old life back - being able to move without pain, etc. Too much to ask?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

noosat1 | @noosat1 | Jan 30, 2019
In reply to @beryl "My name is Beryl ....having had PMR for many years and being on three mg of..." + (show)
@beryl

My name is Beryl ....having had PMR for many years and being on three mg of ped for around two years and I am to keep it at that ....only going up if need be ....doctors orders.....
I have always got pain and have been able to ignore it, during the day at night I can't as it stops me sleeping and will get worse if I didn't take something for it ......I have to take one Norco table when I go to bed , this sometimes sees me through the night at other times it won't and I have to take another half ....it's all ups and downs ......there has been time when I have been perfectly fine at bedtime and I must say then I don't even think about taking anything but this is rare at the moment as I am away in Sicily for the winter and the weather is cold .....yes they are having a bad winter and I am sure cold adds to your pain to....
Just hope when I get back home things get better ......I hope also you can find a common denominator as this seems to be hard to achieve ......best of luck Beryl

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Thanks Beryl for the reply and encouragement. The night/early hours of the morning are bad for me. I want to get back to a state where I can take a vacation with my daughter this year. In the past we have done this together, while her husband looks after all our pets/dogs and cats, but last year I just couldn't make it. This winter, in the "hill country" of Texas has been very cold, and being born and raised in sunny Sydney, I hate the cold. However, at one time I could force myself to wrap up warmly and take my dog to the river and walk the trails for an hour. But this year I cannot manage it. I enjoy reading and writing, so I can fill my days, but I do miss the outdoors, as I was an active runner and tennis player, also a master naturalist. As much as I dislike/hate the prednisone, I've decided to have some quality of life I must use it Thanks again for your kind words. Maggie 🙂

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1 reply
beryl | @beryl | Jan 30, 2019
In reply to @noosat1 "Thanks Beryl for the reply and encouragement. The night/early hours of the morning are bad for..." + (show)
@noosat1

Thanks Beryl for the reply and encouragement. The night/early hours of the morning are bad for me. I want to get back to a state where I can take a vacation with my daughter this year. In the past we have done this together, while her husband looks after all our pets/dogs and cats, but last year I just couldn't make it. This winter, in the "hill country" of Texas has been very cold, and being born and raised in sunny Sydney, I hate the cold. However, at one time I could force myself to wrap up warmly and take my dog to the river and walk the trails for an hour. But this year I cannot manage it. I enjoy reading and writing, so I can fill my days, but I do miss the outdoors, as I was an active runner and tennis player, also a master naturalist. As much as I dislike/hate the prednisone, I've decided to have some quality of life I must use it Thanks again for your kind words. Maggie 🙂

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Oh Maggie my heart goes out to you I can feel your frustration but also admire the way you are dealing with it. Hope you can get out sometimes if only on four wheels. Beryl

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dreamer38 | @dreamer38 | Jan 31, 2019
In reply to @olegraymare "Hmm. I was wondering if there is a connection between hypothyroidism and PMR? I was diagnosed..." + (show)
@olegraymare

Hmm. I was wondering if there is a connection between hypothyroidism and PMR? I was diagnosed with hypothyroidism 6 years ago and have been on levothyroxine since then. I have my thyroid levels checked regularly and the doctor always says they are in range. When I was diagnosed with this thyroid condition, I had no symptoms of my thyroid malfunction except for my TSH blood test levels. I am on 2 - 25 mcg of levothyroxine 2 days a week and 1.5 - 25 mcg the other 5 days (strange, huh?). I have never been in to see an endocrinologist - wondering if I should seek advice about any relationship? Not that it would matter. But, I'm thinking that if my thyroid isn't where an endocrinologist thinks it should be, this could have caused me to be more susceptible to the development of my PMR. Geez, maybe all this research is confusing things? Just wondering if anyone else might have the same situation?

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Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on levothyroxine. Last Oct, I was diagnosed with PMR and am now on 20 mgms Prednosone. Not a fun time, huh? Recently, had an ultrasound done on thyroid as a lump has appeared. If you’re interested, I can let you know the outcome! Never thought of there being a connection. I find all this so very confusing! Please let me know if you learn anything more. Thanks and good luck with your situation.

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1 reply
dreamer38 | @dreamer38 | Jan 31, 2019

Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on levothyroxine. Last Oct, I was diagnosed with PMR and am now on 20 mgms of Prednisone. Just had an ultrasound done on thyroid as a lump has appeared on neck. If you’re interested, I can let you know the outcome! Never thought of there being a connection. I find all this so very confusing! Please let me know if you learn anything more. Thanks and good luck with your situation.

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1 reply
0987654321 | @0987654321 | Jan 31, 2019
In reply to @dreamer38 "Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on..." + (show)
@dreamer38

Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on levothyroxine. Last Oct, I was diagnosed with PMR and am now on 20 mgms of Prednisone. Just had an ultrasound done on thyroid as a lump has appeared on neck. If you’re interested, I can let you know the outcome! Never thought of there being a connection. I find all this so very confusing! Please let me know if you learn anything more. Thanks and good luck with your situation.

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Does taking Dapsone for Mucous Membrane Citricatial Phemphgoid interfere with Leviothyrixine for Thyroid Disease?

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1 reply
0987654321 | @0987654321 | Jan 31, 2019
In reply to @dreamer38 "Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on..." + (show)
@dreamer38

Hi @olegraymare, just read this. I was diagnosed with hypothyroidism a while ago and am on levothyroxine. Last Oct, I was diagnosed with PMR and am now on 20 mgms Prednosone. Not a fun time, huh? Recently, had an ultrasound done on thyroid as a lump has appeared. If you’re interested, I can let you know the outcome! Never thought of there being a connection. I find all this so very confusing! Please let me know if you learn anything more. Thanks and good luck with your situation.

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What is PMR?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 31, 2019
In reply to @0987654321 "Does taking Dapsone for Mucous Membrane Citricatial Phemphgoid interfere with Leviothyrixine for Thyroid Disease?" + (show)
@0987654321

Does taking Dapsone for Mucous Membrane Citricatial Phemphgoid interfere with Leviothyrixine for Thyroid Disease?

Jump to this post

@0987654321, that would be a great question for your doctor or pharmacist unless a member with the same conditions and experience is able to answer. As members, most of us do not have medical training or backgrounds and can't give that kind of advice. I would think a phone call to your local pharmacy may be able to answer your question.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Jan 31, 2019
In reply to @0987654321 "What is PMR?" + (show)
@0987654321

What is PMR?

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@dreamer38 -- PMR = polymalgia rheumatica. PMR is short for as most of us with it know - The Big Hurt. ☺

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0987654321 | @0987654321 | Jan 31, 2019
In reply to @johnbishop "@0987654321, that would be a great question for your doctor or pharmacist unless a member with..." + (show)
@johnbishop

@0987654321, that would be a great question for your doctor or pharmacist unless a member with the same conditions and experience is able to answer. As members, most of us do not have medical training or backgrounds and can't give that kind of advice. I would think a phone call to your local pharmacy may be able to answer your question.

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Anyone have both Hypothyroidism & oral Pemphigoid?

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dreamer38 | @dreamer38 | Feb 2, 2019

I have hypothyroidism and have to see a specialist re oral Lichen Planus. Have been diagnosed with PMR since Oct/18 and am presently on 20 mgms prednisone. Can anyone out there, perhaps John, tell me if it’s PMR or prednisone that causes ankle/leg swelling, foot pain, finger/toe spasms, spasms in back, neck. Any answers would be most helpful...thanks so much! I was very fortunate to have my GP diagnose my problem so quickly, but have so few answers.

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