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?

@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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As I had told another PMR recipient last week this disease seems to affect people that are in good health & were physically active throughout there life, why well only the experts can someday figure it out. Myself I am 76 have been a runner a cyclist which I still am also snow ski & play racquetball but yet somehow I have been blessed with this PMR. Yes started with 20 mg/day of prednisone & in 10 months I am down to 7.5 mg/day. I still do my gym work 4 days a week which helps a great deal. Hang in there this disease has to run it’s course 1 to 3 years & hope it doesn’t come back. Good luck to all who are suffering from PMR

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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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Your right on the exercise regimen it helps with the dealing with the discomfort of PMR also weight control. Myself I don’t know if it was all the gym work that I put in but I never put on weight but then you made me aware of that being on pred. Last Friday after 10 months with being diagnosed with PMR I was able to play a round of golf with absolutely no joint aches at all, Yes steroids can be a nasty drug but carefully taken it works.

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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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For what it's worth, I practice Tai Chi everyday that I am physically capable of doing so….. I find that this movement meditation is a gift that keeps giving to myself….. The benefits are well known for anyone who actually spends the time to learn these simple movements…. the great part is that only in the doing, will you learn this…. You must row this boat yourself….

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@rolandhp One of the toughest things for must of us who live with chronic disorders to realize is that, even in good diet, mental and spiritual health, and exercise, nothing will help the entire body. Just as the body is made up of many semi-independent parts, so our efforts to maintain our own health must cover a huge range of practices. I was a pretty good athlete for many years. Playing, coaching and officiating football; backpacking, at age 55 ran my last half marathon, deadlift Volkswagen front ends, etc. etc. But then things started to go wrong that I could not manage. Eyes failing. Diabetes. Kidneys. Bladder. Prostate. Muscles. Heart. And so on. But I am faced with the reality that, while I did what I could to prepare myself for my older years, I am living with a body that is failing, and at some point, without any other warning, I could have only about a 30 second warning that my heart has quit. Anyway, I still try to keep by body going while living with the knowledge of how it is failing. So, “leave a beautiful memory” for the world.

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well said : )

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Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

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@barbararene

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

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Hi @barbararene — it can be a little depressing but attitude can help and you definitely have the right attitude. One day at time, one step at a time…hang in there! My first round with PMR it took me 3 years to trying to get off of prednisone until the PMR finally went into remission. I’m hoping my second time with PMR goes a little better. I’m now down to 2 mg from 20 mg dosage and it’s only been a little less than a year.

John

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@barbararene

Hello everyone.
I am now on 3mg of prednisone. I was on 1 1/2 mg and was in so much pain. Now I am doing well and am also taking tramadol twice a day.
I am looking forward to the day this will go in remission. I am 59 years old and one thing I have found out, (I work from 5am to 11am), after work I have to rest at least 2 hours a day or the pain comes on full force. I am thankful for the good days.
Hang in there.
This can be so depressing.
Barbararene’

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Sorry to hear about your set back but hang in there it will get better. One good thing & that is your Dr. is trying to keep the Prednisone at a minimum. Yes he could have prescribed a higher dose but as you well know pred. can be very dangerous if abused. Yes this PMR can be very depressing but don’t let it get you down try & keep up your daily activities & try to stay in shape this will help keep your mind off the illness. You can beat this believe me.

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I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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@celebrant

I have recently been diagnosed with this painful condition. At the moment I am on 10 mg. of prednisone and it has certainly helped but not completely reduced my pain. I am stiff and last week felt like I had literally torn my butt muscle from my upper thigh. I hit it with 20 mg for only one day and that certainly helped. I seem to be very tired and I am depressed about this because it stopped my active world in it's tracks. Do I have any co-sufferers on this board?

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Thanks for listing all the PMR related discussions on Connect, @johnbishop

@celebrant, I add my welcome. I have merged your message with the discussion called "PMR Anyone?" so that you can additional members talking about Polymyalgia Rheumatica.

Are you able to do any form of activity to help the stiffness?

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