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) group.

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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I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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@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, I have PMR but do not have hypothyroidism. I have heard of a relationship between the two but don’t know much about it. I did a search and found some info that may be helpful.

National Institutes of Health:
— Prevalence of hypothyroidism in patients with polymyalgia rheumatica and giant cell arteritis.
https://www.ncbi.nlm.nih.gov/pubmed/1913003
— Hypothyroidism in polymyalgia rheumatica and giant cell arteritis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1679950/
Gujarat Medical Journal August-12 Vol-67 No.2
— Association of Thyroid Disorder with Polymyalgia Rheumatica Suggesting Possible Common Underlying Aetiology
http://medind.nic.in/gaa/t12/i2/gaat12i2p138.pdf
John

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@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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Hello Denise (@denisechochran) — welcome to Mayo Connect. We’re glad you found us. I’m sorry you have to deal with polymyalgia rheumatica (PMR). I also have PMR and the first episode I was close to your age and was on prednisone for 3 years. I was gradually able to taper the dosage until I no longer had any symptoms from the PMR. The good news is that once it’s under control you can usually get back to your normal life. I would recommend talking with your primary care doctor when you get back home and ask them about a referral to see a rheumatologist and then discuss with them a plan to taper off of the drug.

Hoping it goes into remission for you quickly and stays there.

John

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@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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Thank you for your kind words and I again sit here in gratitude which i have an overabundance of since I chose to look at this experience as a blessing…. Now as to the future one is a tad apprehensive because of the diagnosis ‘Mixed’ Connective Tissue Disease which strongly implies as does my readings on this site, that this has possibilities to hit me in different ways at consecutive times during this process…. The overlap clearly reads that way…. So if one can maintain keeping this at bay for years I would be truly blessed; I just do not know…

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@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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Thank you so much John!  3 years? Did you have nasty side affects?

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@reagan1mc Well, Regan, I don’t know all there is to know about this, and surviving, but consider the facts. First, you were born with this. Certainly one of the first pieces of “Reagan Materials” in your makeup was a single piece of atom. From that little piece has arisen all this other stuff. But how long has it taken to get you where you are now? It has taken me, actually, over 78 years from conception to now. Oh, I have known for about 70 years that something was not right, and that at some point I would have to deal with it. But that little piece of quantum reality had to double, and double, and on and on. The life span of one of the misfolded pieces of protein is only about 2-4 hours, then it dies and is either urinated out or deposited in a tissue someplace. In the meantime, it has to double a couple times. But these clones are so tiny that the doubling has to take place billions of times before there is enough left over and deposited in your tissue that someone notices something amiss. And if yours is systemic, like mine, that means that instead of just having to produce enough misfolded protein to affect something tiny like a parathyroid or a lymph gland, you have a big fat old person. And that is why it takes so long to figure out what is the problem. The proteins only reproduce at a certain rate, and bigger people might have more tissue to fill with fibrils. And it is no wonder that it does not appear in recognizable form until you are 70-90 years old for most of us. So don’t be too up tight. After all, it is unlikely I will die of this stuff. I have cancer all over my body, and diabetes, and lots of other stuff. Any of that can kill me before the proteins build up enough to endanger my life. Again, they call the English company “Bindings” because they deal with “Connective Tissue”, the stuff that holds us together such as muscle and bone, or arteries and tendons, or ears and skulls. They call it “mixed” because hATTRwt is likely to show up anyplace. And laugh a lot. Some of this lot is pretty silly. I broke a toe putting a a stocking a couple months ago.

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@oldkarl

@reagan1mc Well, Regan, I don’t know all there is to know about this, and surviving, but consider the facts. First, you were born with this. Certainly one of the first pieces of “Reagan Materials” in your makeup was a single piece of atom. From that little piece has arisen all this other stuff. But how long has it taken to get you where you are now? It has taken me, actually, over 78 years from conception to now. Oh, I have known for about 70 years that something was not right, and that at some point I would have to deal with it. But that little piece of quantum reality had to double, and double, and on and on. The life span of one of the misfolded pieces of protein is only about 2-4 hours, then it dies and is either urinated out or deposited in a tissue someplace. In the meantime, it has to double a couple times. But these clones are so tiny that the doubling has to take place billions of times before there is enough left over and deposited in your tissue that someone notices something amiss. And if yours is systemic, like mine, that means that instead of just having to produce enough misfolded protein to affect something tiny like a parathyroid or a lymph gland, you have a big fat old person. And that is why it takes so long to figure out what is the problem. The proteins only reproduce at a certain rate, and bigger people might have more tissue to fill with fibrils. And it is no wonder that it does not appear in recognizable form until you are 70-90 years old for most of us. So don’t be too up tight. After all, it is unlikely I will die of this stuff. I have cancer all over my body, and diabetes, and lots of other stuff. Any of that can kill me before the proteins build up enough to endanger my life. Again, they call the English company “Bindings” because they deal with “Connective Tissue”, the stuff that holds us together such as muscle and bone, or arteries and tendons, or ears and skulls. They call it “mixed” because hATTRwt is likely to show up anyplace. And laugh a lot. Some of this lot is pretty silly. I broke a toe putting a a stocking a couple months ago.

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Thank you so much, for in between all the words I am taking in, I am getting a clearer picture of what this all entails and like they say knowledge is power…. I am not the type either to be overweight or unhealthy…. hell I have not eaten red meat of pork in the last 48 years and have always maintained a boxers build, I fought at the ‘Boys Club” my father and his father were Irish Boxers, my grandfather a fisticuff fighter…. these were tough men, all the way around….

The meat deal was for no significant reason other than a girl who took a liking to me and was an awesome ‘Vegan’ cook in her own right and long after she was gone I never went back to eating red meat or pork. I am 64 and look pretty much like the guy in the picture you see on my profile. I have been muscular from starting working out to fight at 12 years old…. So that is not an issue… I have a feeling that I shall be mentally prepared for what may happen, without looking for it…..

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@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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The only negative side effect I’ve had with prednisone has been weight gain. The first round with PMR I gained about 20+ lbs but was able to lose it after it went into remission. This second round I’m dealing with I have bounced up and down about 5 to 8 lbs and have been more focused on not letting it get out of control. I think exercise plays a big part. The first round I didn’t do much because of the pain. The second round I learned that a little exercise and just keep moving helps a lot with PMR. I try to find a balance and not over do it.

John

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@denisecochran

I was diagnosed just 2 days ago with PMR! Much like you, an active 66 year old on vacation in Tucson for a month, and could barely get out of bed one morning (6 days prior to that day I had been feeling extra stiff and sore, blaming it on the long car ride from Minnesota, bad hotel beds/pillows etc. Urgent care in Tucson diagnosed but is telling me I must see a primary care doctor next weekhere in Tucson. Prescribed 20 mg of Prednisone which gave great relief day one, ok day two, today, day three, I felt poorly in the morning, (not like the day I went to U.C.) took the prednisone, but it took over 2 hours to feel better. I’m reading alot on the internet about changing my diet which seems everybody is suggesting. I’m hoping to get some answers. When I get back home, do I need to see a rheumatogist ? Thanks!

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Yes one feels good then out of the clear blue you wake up & you have PMR. Now unfortunately the only thing that will get rid of the pain is Prednisone there is nothing out there that will stop the pain or cure PMR. As far as seeing a rheumatologist he or she might be able to help but there is a lot that even the specialist do not know or understand about PMR.

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