What's Your Risk For Osteoporosis? November 3, …cdn.patientpower.info/p2docs/transcripts/WOC110309.pdfWhat's Your Risk For Osteoporosis? Webcast November 3, 2009 Philip J. Mease,

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What's Your Risk For Osteoporosis? Webcast November 3, 2009 Philip J. Mease, M.D. Christopher Shuhart, M.D. Carole Clarke Please remember the opinions expressed on Patient Power are not necessarily the views of Washington Osteoporosis Coalition, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Introduction

Andrew Schorr: Osteoporosis affects 25 million people in the United States today, and some people are calling it the silent crisis. Coming up you'll hear two leading experts who will help you understand if you're at risk and what can be done about it, next on Patient Power. Hello and welcome to Patient Power. I'm Andrew Schorr. This program is brought to you by the Washington Osteoporosis Coalition and made possible through educational grants from Amgen and Novartis. We're talking about osteoporosis, and, you know, the way to think about it--and we're going to learn a lot more about osteoporosis as we go along today with two leading experts and a woman who is concerned about it for herself and in her family--is we're really talking about bone fractures. And I'll tell you the cost of fractures in America is just tremendous and it's something that's worrisome. Caring for bone fractures from osteoporosis costs America $18 billion a year, so when we talk about healthcare costs, it is definitely a factor. And for instance one in two women and one in four men over 50 will have an osteoporosis-related fracture. It is something you do not want to have happen. And as we get older a fracture can frankly lead to tremendous complications and maybe ultimately your demise. So it is something we need to pay attention to and ideally knowing your risk and lowering your risk and preventing these complications. Now, I live on Mercer Island, Washington, and my new best friend, who I haven't met officially yet but she's a guest on our program, is Carole Clarke. Carole is 65 years old from Mercer Island. And, Carole, you became concerned about osteoporosis because of your mother, Eleanor. What was going on with Eleanor that really raised awareness for you? Carole’s Story

Carole: Well, when my mother was 70 she tripped over a cord and fell on the carpet and

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broke her hip, and at that time all they could do is put a steel plate in her hip, and her recovery was difficult. And then I took her to physical therapy, and she had arthritis in her knees, and when she would sit because her knees couldn't hold her well she'd just kind of plop in a chair. The physical therapist said, if you sit that way you could break little bones in your spine. And that just stuck with me is how awful that could be, and I'd seen the women that, and mother eventually became that way, they're kind of hunched over because you don't know you're breaking those little, bones but then it starts to hurt and you have problems. And eventually she was in a nursing home, and just moving her one time her leg, a bone in her leg broke. So I knew I didn't want that to happen to me, and so I've been trying to be very proactive to prevent experiencing what my mother did. Andrew Schorr: So you began a discussion several years ago with your gynecologist, I guess, and that ultimately led to you actually taking some medications to try to limit bone loss. Is that right? Carole: That's correct. What happened is my mother also had some dementia, so she moved living close to me, and I took her to the same gynecologist I went to. And so when I was 50 and starting to go through menopause my gynecologist said you want to be on estrogen replacement because that will help protect your bones, and she even put me on a little higher dose. And I did that for a number of years, and then of course we had the estrogen scare, and about that time we were here on Mercer Island, and I was seeing Dr. Mease about some arthritis issues, and he ran the tests and saw that I really should be on Actonel. But also both of us I think believe in physical therapy, so I also went to physical therapy and got a set of exercises that I still do and also went to an endocrinologist and found that I was low on D, so Dr. Mease's physician's assistant, Sue has recommended me being on a high dose of vitamin D in addition to the D I get with my calcium. But all of that I wouldn't have known if I hadn't had all those tests and the bone scans. Andrew Schorr: And the image of your mother and the problem she had really propelling you. Carole: Oh, exactly. And that's a concern, is that other people don't have that and you call it the silent killer. I mean, I don't have any symptoms for my osteoporosis, you know. Until you're suddenly bent over there's probably a lot of people who don't know. So in a way I was lucky she showed me, my mother showed me what could happen. Andrew Schorr: Yeah. We're going to talk more about that. We'll also talk about any connection in families and for men as well as women. We'll have a whole series of programs

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we're doing, today really devoted to knowing your risk. Now, you mentioned that you had various measurements. So when those measurements were done did it show that you were losing bone mass and that was a concern? Carole: Yes. First, they call it osteopenia when you're kind of borderline, and in fact that's where I am in my one hip that I still have. And then my spine is where I actually have the osteoporosis, that you go down, a minus number. They call it a T score, which the doctors can probably explain better than I can, although I have tried to research that a lot so that I can understand what my options are and what those scores are. Problems Caused by Osteoporosis

Andrew Schorr: Well, we call our program Patient Power, and the research that you do and really taking control of your health is what this is all about, and people knowing their risk where the costs of osteoporosis are so high, particularly later in life, we want to really help lower that cost. Carole, we'll be back to you, but let's meet this physician you met who is your doctor, and that's a renowned rheumatologist. That's Dr. Philip Mease here in Seattle. And he's in rheumatology clinical research. He's at Seattle Rheumatology Associates. He's the director of rheumatology clinical research there for Swedish Medical Center. He's a clinical professor at the University of Washington School of Medicine and renowned in helping develop new medications and really understanding what's going on with a condition like osteoporosis. Dr. Mease, we're not kidding. The cost of osteoporosis and fractures is really very high, isn't it? Dr. Mease: It is catastrophic when you think about all of the costs both direct and indirect that go into caring for this problem, much of which can be improved by appropriate dietary and medication approaches. So it is, especially in this day and age where everyone is focused on healthcare costs, this is a huge dilemma for us. The direct costs are obviously related to the medical visits, the medications, the hospitalizations for fractures, the nursing home stays that have to do with recuperating from, say, surgery for a broken hip. And the indirect costs are all of the resources that go into caring for those individuals by family members, the lost time off from work and that sort of thing. So it is an immense problem. The issue is the fact that it is silent. And so for many individuals they won't be aware of it at all unless the physician asks them about their height. A simple question and perhaps just getting on the height measurement stand at the doctor's office and you go, oh, I've lost a couple of inches since I was in my 30s. What's that about? They may not have any clue about what's happening when in fact what

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is happening is that the vertebral bodies, the small bones of the spine that Carole was referring to, will settle like a souffle will settle if you let it sit after it bakes. And this is due to loss of the intricate spider web of calcium threads that constitute the fairly porous bone of the vertebral bodies. It's a wonderful structure, but with time in many individuals you'll lose some of those calcium struts, and the vertebral body will gradually settle, and you'll lose height and gain that stooped appearance that Carol's mother experienced. Then the other problem is obviously when a vertebral body acutely, suddenly fractures and will generate considerable amounts of pain. That's an acute vertebral fracture, as we call it. And the other classic situation is when an older person is getting up at night to go to the bathroom, trips on a rug because there's a loose throw rug around or something has been dropped on the floor, falls and breaks a hip, or by breaking herself with her hand fractures a wrist. These are some of the common places where fractures can occur. So these are all the obvious telltale signs of osteoporosis. Andrew Schorr: Now, if somebody false, like an older person falls, and men as well as women, then instead of being active and maybe they were trying to be active, maybe they're then bedridden, and I know then there are concerns about pneumonia and other things setting in, and as I said at the outset it can lead to someone's demise, right? Dr. Mease: Exactly. Andrew Schorr: It starts you on a slippery slope down. Dr. Mease: That's right. It's a common story unfortunately that someone like Carole's mom will fracture her hip, go into the hospital, have a hip replacement, perhaps go into the nursing home to recover and be gradually be mobilized. Now, fortunately many people get through that okay, but some will either develop a pneumonia because they are immobilized, they're exposed to other people in the nursing home who have respiratory illnesses that they may catch from them, or by lying still for long periods of time they may develop a blood clot in their legs that will travel to their lungs. We call that a pulmonary embolism when that happens, which can be deadly. So between pneumonia, blood clots going to the lung or bed sores that may happen because a person lies about for a long time and then gets an infection that way, these are all ways in which elderly people with other problems, congestive heart failure, kidney problems, and so forth, may actually pass away. And much of this is so preventable. That's one of the shames of it. The Relationship and the Role of Your Primary Care Physician

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Andrew Schorr: Well, let's start with the conversation you can have with your doctor. Now, also joining us as a guest tonight is Dr. Christopher Shuhart. He's the medical director for Swedish Physicians Bone Health and Osteoporosis, their program here in Seattle. Dr. Shuhart, so you're a primary care doctor. So people talk to you about their cholesterol. Hopefully people are mindful of that. And you go to the doctor, and they're always taking your blood pressure now, so maybe people are beginning to understand whether they have hypertension. Maybe with as many people who now have some concern or take medication for anxiety or depression, maybe they're aware of that. But I don't know if people are regularly talking to their doctor about their bone health. How do we have that conversation, because I know you're a believer that it's important. Dr. Shuhart: Yes, Andrew, it's very important. I think that as a primary care doctor one of the things that primary care doctors have to do is primary care doctors have to begin the conversation. Part of what I see is the issue here and the challenge is that primary care doctors in general have a slew of things on their plate that they're expected to take care of in any one visit with a patient and we know, Dr. Mease and I know and Carole certainly knows as people who have experienced what can happen when bone health goes back, that being proactive about it, understanding your risk is critical. If you're a patient what I'd say is first and foremost you have to ask your doctor, you have to be able to have a conversation with a doctor who can engage you. And my advice to people when they say it's difficult to connect with their doctor about issues that are on their mind is to think about finding a doctor who works for you. So that's the first thing. The second thing I would say is that as a patient sometimes doctors, honestly primary care doctors and other doctors, aren't aware of the risk. So if you have some particular information that you know is from a good source as a patient and you bring it to your caring, understanding, empathetic doctor, your doctor should be able to hear your concerns about that. And then the third thing, I think that Dr. Mease pretty aptly outlined what can happen when people develop clinical osteoporosis that is a manifestation of bone weakness and fragility that leads to fractures. But one of the beauties of this is that we have technology to be able to assess patients and help determine what their risk for an osteoporotic fracture might be before they ever fracture and thereby avoiding some of those things. So talking with your physician about, Doctor, am I at risk? How do you know I'm at risk? What do you think we should do to help ascertain what my risk is? I think those are three general areas that patients can empower themselves to get their doctors into the conversation with

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them. The Genetic Connection

Andrew Schorr: Okay. We're going to be a lot more specific as we go on. Dr. Mease, so in Carol's situation her mother, it appeared, had osteoporosis, would fracture easily as she got older, and that was such a vivid picture that Carole had in trying to prevent it in herself. So first of all, genetics. We're going to talk about other risk factors, if mom or grandmom had these problems are you likely to have it too or your sister? Dr. Mease: Genetics is a big part of this, absolutely. So we do know that a tendency toward osteopenia or osteoporosis will be passed down through the generations, so that was a very important clue for Carole to know that her mother was osteoporotic. We could tell if we were to look at Carol's mother that she, with that first fracture when she fell, the hip and then the curvature of her spine that she had osteoporosis even without needing a machine, a technology to tell us that. There would be no other reason for her appearance that way. The bigger challenge is in a woman, or a man for that matter, who is younger, has not lost any height, to tell about whether or not they may be at risk. Here the family history comes into play, dietary history. The variety of factors having to do with whether or not they have a background problem with rheumatoid arthritis, which is a risk factor; whether they have been a smoker historically or currently, which is a risk factor; whether they have ever needed to be on cortisone-like medications, steroids, for treatment of a condition like asthma, for example. So these are all clues about risk. Obviously another big one is whether a woman has passed through menopause or not, because once she loses the natural estrogen that happens after menopause, then the process of osteoporosis really accelerates because there is a net increase of bone destruction compared to bone formation. Up until the time of menopause the two forces of bone formation and bone dissolving that are constantly going on it through our lives gets into imbalance, and the net loss of bone density starts to occur. So somewhere along the way here a key point to be made is either the patient asking for the physician or responding positively to the physician or nurse practitioner or physician's assistant who is interested in having a bone density scan done for the patient, and that can tell us a lot about the quality of the bone both of the hip and the spine. And you get different readings on the computer which give you something called a T score, and this is what Carole alluded to earlier, which gives us a relative ranking of where the patient is compared to when she was younger. There are statistical sets that tell us for a woman of this age and height and race what was her likely bone density when she was in her early 30s, at the peak of her bone density, and then where is it now. So the T score is reported as a

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standard deviation of change compared to that ideal score. So if a person falls in the minus 1 to minus 2.5 range on the T score they're considered osteopenic, or if they are below minus 2.5 then they're considered actually osteoporotic. And then especially in the latter case it makes us all swing into play in terms of appropriate treatments, either pharmacologically as well as with calcium and vitamin D. One other point I would make is that any woman really after the age of from the early 30s on should consider taking some calcium supplementation especially if for any reason they suspect that their diet may not have an adequate amount of calcium in it. And then the other recommendation that we're commonly making is to take some vitamin D which is important to help the calcium work in bones and especially in places like the Northwest where we rarely see sun. The sun is an important element in helping us have an adequate amount of vitamin D, so people in the northwest where we live are especially vulnerable to having low vitamin D levels. So all the way along a person and especially women should be aware of the fact that inevitably they're going to start to lose bone density at some point in time in their lives after the early 30s and to be starting to work against that by taking an adequate amount of calcium and vitamin D and at the appropriate time interval in their life to start considering actually measuring the bone density and seeing where they stand and if they should get actual medication therapy. Screening

Andrew Schorr: All right. A question for Dr. Shuhart. So hopefully your primary care doctor is aware of any conditions you have, whether you've been taking steroids for asthma, whether there's a family history or certain medications that would affect your bone, and hopefully you are drinking your milk when you were a kid, or if you had lactose intolerance there are were other ways of getting calcium. So now let's say it's on the radar, this DEXA scan or bone mineral density scanning that Dr. Mease was mentioning, is it a big deal, or is it a simple test? Dr. Shuhart: It's actually a very simple test, Andrew. It's a very low level intensity x-ray test, and it's a test that is correlated by computer. As Dr. Mease had alluded to, we receive information from the machine that compares the density of calcium mineral in the bones at certain sites of the body to a reference population, a standard population that is used in the machine, and we look for the differences between the patient's bone density and the young, normal, healthy bone, and assign that a score called the T score. The test actually takes 15 minutes. The actual doing of the test is 10 to 15 minutes. There may be anywhere from 10 to 15 minutes of preparation. Most

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women or men can expect about 45-minute turnaround time to get their scan done. Many times patients will asked to undress because things as simple as waistbands and elastic garments to navel rings in those of us young enough to have them can end up in the scan and bias the relates of the scan. So a patient may expect to undress into, say, an examination gown. It involves basically lying down on a padded table, which is actually quite comfortable, for a number of minutes at a time. A scan is acquired from the spine generally with the patient's knees in a bent, flexed position and the hips in the flexed position. Then a scan is acquired of the hip or hips, depending on the machine, with the patient's legs rotated inward to put the hip ball and socket joint in the proper position for the scan. And then in some instances we actually acquire a scan from the forearm, and generally what happens is the patient will sit in a chair aside the table with their arm up on the exam table and the scanner arm will pass over them to acquire the scan. Andrew Schorr: And I know here in Washington state there are heel tests too. Where does that come in play? Dr. Shuhart: Well, heel testing is ultrasound testing. The ability to measure what the actual mineral density of bone is, different technologists can measure this in different ways. Ultrasound can be used in the heel and in other places in the body to get a measure of bone density. But the issue of heel density and other ultrasound densities, there's a couple issues. One of them is that the standard that was put forth by the World Health Organization to classify osteoporosis in 1994 is a standard based on x-ray bone density scanning, on DEXA scanning, which we were just talking about. So we have no way of actually taking the results from an ultrasound test and applying them to the diagnostic classification of normal bone density, osteopenia or osteoporosis. The second thing is that what is measured in an ultrasound test is not the calcium density of bone, it is the speed with which the ultrasound goes through the bone, and the density is arrived at through mathematical computations and comparisons. It's not exactly the same thing. The third thing is that we know that there are some I'll use word biases inherent in ultrasound testing that create offsets so that it's hard to be able to know exactly what a T score means below a level that is very close to normal. So Dr. Mease and I understand that there are certain patients who for whom a heel scan really doesn't mean a whole lot. The patients who take for instance corticosteroids, medications like prednisone, we would discourage patients from using a heel scan to screen them for osteoporosis. In general the way most people look at heel scanning and ultrasound scanning is to use it as a screening tool to understand whether or not you might need to go on

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and talk with your provider about getting a DEXA scan. In general if you have a T score on ultrasound, heel ultrasound, of negative one or greater, and I know that's a little bit of a number line thing, it's hard to visualize sometimes, negative one or greater, in general, that's an okay score. Anything below a minus 1 in routine patients is something that ought to be brought to the attention of a healthcare provider who understands the issues and can order a drew DEXA scan on the appropriate patients. Andrew Schorr: Dr. Mease, one more question just about screening, and that is I know there's a questionnaire also used maybe nationally or internationally to look at somebody's personal situation, their risk factors to try to come up with sort of a score there. Maybe you could tell us about that. Dr. Mease: Right. So in has appeared in the last few years and I think it's a wonderful collaborative effort amongst a number of osteoporosis experts, World Health Organization and so forth, that has come up with this tool that's called the FRAX. It's the WHO, World Health Organization fracture risk assessment tool, and it's spelled F-R-A-X. And if you actually just Bing or Google FRAX, F-R-A-X, you'll see a number of things up in the list. You'll see FRAX score. You'll see FRAX calculator. And you as an individual, you don't have to be a healthcare provider, can go to the FRAX site and browse around and see what are some of the key issues that go into the calculation for the, quote, ten-year probability of fracture. And it gives you an estimate. It actually allows you to dial in where you are in the world because the rates or risk for fracture are going to vary depending upon your ethnic background, what the expected dietary intake is like in various parts of the world. And it also takes into account that for example in the US it has a site to put in the actual score from the bone density scan that we've been talking about, whereas it acknowledges that in other parts of the world where you don't have this type of technology available you can do calculations without a DEXA score. So it asks you to plug in things like your age, your gender, what your weight and height is, whether you've had a previous fracture, whether your parent had a fractured hip. So in this case Carole would have been putting in yes. Whether you're a smoker, whether you're taking steroids, whether you have rheumatoid arthritis, whether you're a drinker. These are all the kinds of things that go into the calculation, and you can actually calculate the risk for fracture. This we find to be a very valuable tool in practice because sometimes a person may say, gee, this is a silent condition, why should I be concerned about really being consistent with taking calcium or vitamin D or taking a medicine that you are recommending for me when I'm not really that keen on taking medicines. And if you see the actual risk that you have for fracture and if you see that it's relatively high, that's a true motivating factor, especially if your doctor or the nursing staff takes the time to educate you about some of the consequences of ignoring taking

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care of yourself in this regard. I think it's as important as the way in which people especially in the Northwest have come to realize that exercise is a good thing for them for their overall cardiovascular and emotional health, or quitting smoking is good for your health. So too is having a good grasp of your bone health, which is so simple and so straightforward for people to understand. With just a little bit of discussion about these risk factors I think that a person can go a long way toward staving off some of these problems that we've been talking about. Andrew Schorr: All right. I have this image. You know, my mother always told me to drink milk as a kid, I still have it. And we're going to talk about exercise. We're going to talk about vitamin D. We'll talk about calcium of course and things we can do. Carole of course is very attentive to this. One last question before we take a break for Dr. Shuhart. Dr. Shuhart, we talked about these scans, so if you're following somebody how often would somebody have a scan to see how things are going? Dr. Shuhart: Right. Well, there's still some controversy about what we should do in terms of repeating scans on the routine patient. It's fairly clear, Andrew, that if you are diagnosed with osteoporosis and you are given a treatment plan that includes medication to help lower your risk of fracture that if you take your medication the way you are supposed to, and for many of us that's very difficult. I take medicine every day and there are some days you know I just don't want to take it. But if you take it the way you're supposed to it will lower your fracture risk. But sometimes there are certain patients especially if they're taking medication that's expensive or medication that tends to give them side effects, even if they're just minor side effects, they want to know that their medicine is working. And just like high blood pressure. You can go to the doctor's office, your primary care doctor's office, and you have a blood pressure 150 over 90. You get put on a medication and your blood pressure is now 126 over 80, and your doctor is happy. You see the numbers come down. It can be a motivating factor for patients to see their bone density increase and increase in a way that is significant for their risk. So generally I wouldn't and I think many people don't repeat a bone density study until about two years after the routine patient has been on a therapy known to increase bone density and lower fracture risk. There are some caveats to that. The patient on steroids can have a very rapid response when treated, so sometimes we want to do a follow-up study in a year. But we also have to understand that there are limits to the technology. The ability of the machine to discern a difference between the time that you are diagnosed and not on medicine and two years later when you are on medicine, the differences that

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we're talking about in your bone density over that time on treatment are in the order of two or three or four percent. And there are some statistics that are involved, but suffice it to say that because the effect of the medicine over that period of time is quite similar to the variability in the measurement of the machine over that time, in generally less than two years we really can't discern a statistical effect of medication or any kind of therapy because of what the machine, the vagaries of the machine and the technologist, the positioning of the patient, etc. So my routine recommendation for someone on therapy is two years. There are other ways to be able to ascertain whether or not medication is working. There are actually some non-bone density tests. There are tests of urine and blood that sometimes can assist doctors in understanding has the medication done what it's supposed to do. Is it working on those cells that reabsorb bone, causing them to go to sleep and allowing the cells that lay down new bone to predominate? That kind of testing can be done at a three-month interval after starting therapy, but it's a little more complicated and there are some vagaries of that testing that it would be important for ordering practitioners to know about. Andrew Schorr: All right. Well, I think in our first segment what we've really brought home to people is it is something you need to pay attention to, assess your personal risk with the help of your doctor, have that conversation. And then testing, frequency, medications or not, more calcium or more vitamin D or not, all that then is individualized too. And we're going to talk about that as we continue our discussion after a just a brief break. We'll also hear more from Carole Clarke about her recommendations for you the listener about how really you can be attentive to your bone strength and density and what it means and what action you can take. And we'll also hear more from Dr. Philip Mease, a rheumatologist who specializes in this and also from Dr. Christopher Shuhart, primary care, dedicated to this and lowering your risk. We'll be back with more Patient Power right after this. The Role of Diet and Exercise Andrew Schorr: Welcome back to Patient Power as we're doing our first program in our series about osteoporosis. When we talk about osteoporosis we are really talking about fractures. Fractures that can lead to someone, as we talked about earlier, really having a much rougher time, and it could shorten a person's life. And we're not just talking about women. We're talking about men as well. And we want to lower your risk of that, whether it's osteoporosis or when it's less pronounced, osteopenia. We want to really help you know your risk and then have a plan with your doctor so that you have the best bone health possible. Let's go back to Carole Clarke. So we told the story earlier about Carole and her mom and how she was having fractures. Now, Carole, you are aware of your condition and you mentioned earlier about vitamin D, and you're taking some medication which was indicated in your case and maybe I think you have even

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changed medication along the way. And you exercise. Tell us about what exercise you do and how you really are religious about that to try to have your bones be as strong as they can be. Carole: Well, as I mentioned, I went to a physical therapist who alerted me to a book that had exercises for osteoporosis, and I also looked online. However, I don't exercise well on my own. I say I'm going to. And I was lucky enough that when I was looking around for a class I visited one that's at our church. It's a free exercise class, and what the lady was doing, because it was for people 55 and older, most of them are the exercises that were in that book for osteoporosis. You know you want to get your shoulders back and strengthen all those muscles so they hold the bones up and also that your legs are strong and your balance is good and all those things that you could have a danger of falling. And everybody wants to do that. So I go to that class on Mondays and Fridays. And then on Wednesday I'm in a walking group that we're fortunate to have on Mercer Island, called the Sole Mates, and that's for 55 and older. And we walk three or four miles and have coffee and talk the whole time, so it's fun and we get out. Then on Tuesday and Thursdays, at least one of those days and hopefully one of those are on the weekend, I go to a fitness center where there are machines. And again my physical therapist, because I had a hip replacement too due to my arthritis, taught me a set of exercises at the end that I could do on the machine at the fitness center to both protect my hips and my knees and to build my shoulders and my arm muscles and my back, then I also do a bicycle so I'm doing more weight bearing. I used to swim and swimming is not weight bearing. It's great exercise and good for your heart and I still swim some, but I really learned that I need the weight bearing to help build up my bones and protect them. So luckily I'm retired now so I have lots of time to do this, but even when I was working as I travelled the state I would stop by the fitness center on the way back and do those machines. Andrew Schorr: In addition you said though that you take some vitamin D, you take some medication. How do you stay on that? Because as Dr. Shuhart was saying, for anybody, you know, remembering to do it, do it with regularity as prescribed is hard. What propels you? Is it again going back to the image of your mom? Carole: I think so. Also in my walking group there's a lady who went to New York to the opera and getting up out of her chair in New York her hip gave way and she had to have her hip replaced there. So I think it's all around us, and I don't want that to happen to me. So I know that's part of it. But I also trust my doctor. Like I said I went to the endocrinologist and everything, and I came back to Dr. Mease. He looked me in the eye and he said, you need to

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be on Actonel. So I'm very clear on that. I've studied it. I worry about it a little bit like I worried when estrogen was bad and I had this scare with Vioxx, so I keep up with the information about the side effects. But the choice for me is that I need to do it, and so then I set a schedule. Sunday, I love to read the Sunday paper. So you have to wait an hour, really it's a half an hour but I wait an hour, before you eat, so I take my Actonel and get my water out because you can drink water but you can't eat, and I haven't even gotten through the Sunday paper when my hour is up and so then I can eat my breakfast and go on with my day. So I just make it part of my routine. Andrew Schorr: There you go. Carole: And my vitamin D, I have, you know, those little old lady boxes, and in the morning and night I take whatever is in there that are good for my joints and my bones, and it's just part of the routine. Like this morning I didn't want to get up because we'd had the late dinner party, but I knew that I had to be out of here by a quarter of nine to get to the exercise class. So I got up early enough to get dressed and go to exercise. Andrew Schorr: You're so devoted. So, Dr. Mease, now, she mentioned one drug, and we're going to talk a lot more about prescription medicines, and I think you have many now, right? Again, that's going to be individualized to the patient. Dr. Mease: Before we even mention again prescription medications, a root foundation is to make sure you have enough calcium intake and enough vitamin D. I was just listening to Carole talking about her exercise routine, and I just had chills thinking about how good a patient she is. So unusual to see someone that compliant and that motivated, so I think that's fantastic, Carole. So getting enough calcium and vitamin D you can do some calculations based on how much dairy products you're taking in and that sort of thing. There are a lot of people, for example, who are lactose intolerant, who can't get in enough dairy products and so they have to take more calcium. You have to be mindful of that. And vitamin D again our recommendations have been changing. When I first entered practice it was 400 units a day. Then it became 800 units a day. Then more recently it's up to 1,000 or 2,000 units a day. So many times you can actually measure whether or not you're getting in enough vitamin D, so I think those are cornerstones there. Then there are a group of medicines that are commonly used and more coming, which is very exciting. And I know in future programs that you're going to be

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doing, Andrew, you're going to be talking about these in more depth, but the most commonly used medicines these days are the group known as the bisphosphonates. And these are medicines that their trade names are ones like Fosamax, Actonel, Boniva, and there's a new one that's given in intravenous form once a year known as Reclast. When they first came out they were daily and kind of a pain to take because you had this business of taking them on an empty stomach. Then they became weekly and then monthly. And there's another one that probably will be available to us sometime within the next year that's a just injected underneath the skin once or twice a year. So it's all becoming a little bit easier to do and quite effective. There are a minor list of side effects that your clinician will discuss with you, but overall these medicines have been pretty darn well tolerated and really have made a difference for many people. Listener Questions

Andrew Schorr: Dr. Shuhart, we actually got a question I wanted to pose to you that relates to what Dr. Mease was just saying. Dianna sent an e-mail in from Seattle. She says, "I'm a 25-year-old female who is lactose intolerant and I'm a vegetarian. I exercise quite a bit, but I worry about my bones because my grandmother had osteoporosis. Are there some strategies I should incorporate into my life to make my bones stronger," she's 25, "and any nutrition ideas to compensate for the lack of dairy in my diet?" Dr. Shuhart: Well, it's admirable that a 25-year-old is sending in a question regarding her bone health. Andrew Schorr: Right. Dr. Shuhart: So one of the things that can't be undone is the maximization of her genetic potential for bone mass. You had made some allusions earlier to drinking milk when you're a kid and those kinds of things, Andrew. Those things are critically important for children in our country and in other countries. We know that the time that people maximize their bone density is essentially between the times of 13 and 20. After you get to about 20 to 25 you've had all the bone density you're ever going to have, and you will slowly lose bone getting to about age 35 and beyond. So the things that people can do to maximize their genetic potential, which is probably 60 to 65 percent of what is their risk for fracture, is not smoke, not consume alcohol to excess, and we have a decent understanding of what excess means, to, as Carole already alluded to beautifully, weight-bearing exercise is critical. Resistance exercise is even better. We know that bone responds so

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overloading, and generally overloading of bones causes bone to get stronger. So those are some of the lifestyle choices people can make. As far as calcium intake for patients who may be lactose intolerant, as a primary care doctor when somebody tells me that they're lactose intolerant the next question I will always ask them is, what do you mean. And they may tell me that they were told they were lactose intolerant because their mother was lactose intolerant. They may tell me that dairy products just don't sit well with them, and they can't be more specific than that. Or they may tell me that they get the kinds of symptoms that people get when people cannot absorb lactose well from their small intestine. For those patients we're really going to talk about calcium supplementation. We're going to talk about other sources of calcium, and there are plenty of other sources of calcium in diet. It's just that dairy products are really probably one of the most concentrated sources that we have. So in the Pacific Northwest if you eat canned salmon, or elsewhere in the world, that salmon has bones in it, and they're bones that you chew and swallow. Bones are loaded with calcium. So a three-ounce serving of canned salmon has as much calcium in it as a 500 milligram calcium tablet has. So that's one small alternative way. Dark green, leafy vegetables are fairly high in calcium, although there is some controversy about whether or not the body can actually absorb the amount of laboratory calcium that could be removed from those vegetables in the laboratory. But we'd really talk with the patient about getting the calcium in in terms of supplementation that's easy and well tolerated. I always tell patients when they ask me, what's the calcium I should take, I tell them, the calcium that you'll take. Because taking calcium is always better than not taking calcium and if you have to take your calcium on an unusual schedule or you have to spend $80 a month for your calcium, there's a decent chance that you might not take that calcium. And Dr. Mease has already alluded to vitamin D. We know that vitamin D is critical for bone health and may be important for other health items. Almost everyone that we see in the Pacific Northwest who is not taking an decent amount of vitamin D replacement is vitamin D deficient. And I too am in the recommendation of 1,000 to 2,000 units a day of vitamin D3. That's another thing that your e-mail participant can do. Andrew Schorr: I got a couple of quick follow-up questions for you. Carrie wrote in from Portland Oregon. She said, "Both my great grandmother and my grandmother had osteoporosis. I exercise regularly, lift weights. I eat a well balanced diet. I was taking calcium supplements for many years, but then my doctor found my calcium levels too high. My question is, is it inevitable that I will have osteoporosis and what can I do now to prevent it?" So can you take too much calcium?

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Dr. Shuhart: Certainly you can, and generally if this particular e-mail participant's calcium level was too high I wouldn't believe that it's from calcium supplementation. I would want to know why that particular person's calcium metabolism wasn't getting rid of the excess calcium that was being put in. We have wonderful calcium balance systems in our body. You can take quite a bit more calcium that you need every day, and it will end up coming out in your urine, or at least it should you if you have normal calcium balance mechanisms in your body. So my response to that would be something else is going on. It begs the question of when we take a patient off calcium for a high calcium level what the problem was to begin with. Certainly there is the rare patient who is taking high doses of vitamin D, for instance, may have an underlying disorder and takes enough calcium to push their calcium up to a level that's clinically important for their health too high. In other words or they develop a manifestation like kidney stones, for instance. But I think Dr. Mease and I would both agree that that's extremely rare and usually begs the question of some underlying problem with calcium metabolism. Andrew Schorr: All right. Dr. Mease, I have a couple of related question for you too as a rheumatologist. So for many years women were encouraged as they were going through menopause to take hormone replacement therapy, and that would be good for your bones. And we talked about menopause being a risk factor. And then there was some research then about does it raise your risk of breast cancer. A lot of women then backed off from that. So where does that fit in? Where are you related to hormone replacement therapy as a way for help you have stronger bones? Dr. Mease: Andrew, there's no simple answer to that question or standard answer. It really has to be customized to each individual that we're working within the clinic. It used to be that I could give a more standard or pat answer, and there was a time when I was younger and the pendulum was on the other side where estrogen was just fabulous and should be used by everyone as they were perimenopausal and menopausal to not only improve the symptoms that happen in menopause but also to improve bone density. And there was a time when actually there was some thought that it might even improve cardiovascular health. Now the pendulum has swung based on newer and larger studies, and there is concern about cancer, breast cancer risk, about cardiovascular risk, and so we're seeing less estrogen being used, which is for some women a problem in relation to bone health and all the more reason why we need to be looking at other medicines to use in those cases. But I do find in select women at least a period of time of estrogen. Especially immediately after menopause when they're most symptomatic with hot flashes and

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other symptoms that are a real drag during that time phase, estrogen is just a very appropriate type of therapy for controlling those menopausal symptoms and doing the double duty of helping with bone density. But I think the take-home message from the newer studies is possibly not to use it too long and to consider introducing other types of medicines for bone health after the post menopausal symptoms have gone away. I do want to insert, Andrew, just a quick comment to agree with Chris on that last question. Generally there's no relationship between dietary intake of calcium and level of calcium in your blood. That's a misunderstanding if the clinician is making that statement. I agree with Chris that there are a couple of possibilities here. One is that we can have high levels at the laboratory test and it may be meaningless, and simply repeating the test and finding it it's within the normal range and so you can ignore that one slightly elevated test. But if the level is meaningfully elevated then one of the types of tests that might be done is to check the parathyroid hormone because that's an important hormone that's involved in regulating calcium levels in your body. Andrew Schorr: All right. Just one other question that I've thought about and asked other bone specialists and cancer specialists. So the cancer doctors, the dermatologists, say be careful of the sun, wear sunscreen. And, Carole, I know you've told me you're careful about sunscreen, and you've talked about how your vitamin D levels can be low and here in the Northwest we have a lot of gray sky, so we're not getting it. But what do you say about sunshine, then, Dr. Mease, and not having sunscreen so those rays get through versus lowering your risk of skin cancer? Dr. Mease: Oh, boy. What a paradox, isn't it. And indeed it is a pair of docs, so to speak. So you've got the cancer docs on the one hand and the boneheads on the other hand telling you two completely different things. I don't know that there's a perfect answer here because we do know that there is a much higher incidence of skin cancers in Southern California and Arizona and so forth, so there you go. That is an issue. But those people are more replete with vitamin D. They don't have to worry as much about taking vitamin D supplements. Maybe we're in the best situation up here, Andrew, that we don't get skin cancer. We're very attuned to the need for vitamin D supplementation because everybody is low. So there you go. You get vitamin D through your supplements and you don't get skin cancer by living in the gray Northwest. Lowering Your Risk of Fracture Andrew Schorr: There you go. Dr. Shuhart, so there are people who have hip fracture, maybe osteoporosis was certainly at work there, and the last thing you want is more fractures. So what about that situation for somebody who is already started down

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this road and we want to just lower their risk of more? What about that situation? Dr. Shuhart: Andrew, that's a critical time to understand that, you know, this is what we call clinical osteoporosis as Dr. Mease had talked about earlier. We don't need a densitometer to determine whether or not these patients have osteoporosis. They've shown us that they have osteoporosis unfortunately, and it's really up to healthcare providers to respond to that. What we know from information about the minimal needs of patients after hip fracture is that the healthcare system in the United States does a very poor job of identifying those patients for treatment and/or identifying them to have a bone density test. For every 100 patients that fall and break their hip only about 18 of them get either a bone density test or get medication within six months of their fracture diagnosis. So this is what we would consider to be clinically low fruit, low-hanging fruit, but it's been very, very difficult to get this number to budge. Literally, over the last eight or nine years it's barely gone up two or three percent, and that's really because we don't have a concerted effort at developing systems to take care of these patients. A patient comes into the hospital with a hip fracture. They've got a 50/50 chance of ending up in a nursing home, and they've got about a 20 percent chance of ending up in a nursing home for longer than six months. Almost always these are patients are elderly, and what we also know about treatment is that the older you are the better treatment works in terms of lowering your risk for subsequent fracture. So we need to try to develop systems to take care of these patients and understand the way that these patients move through the healthcare system so that we can approach them from multiple points getting them the treatment that they need, that they really deserve. Because the second fracture is almost a death knell for those patients. Once you have had one hip fracture if you end up with a second fracture chances are great you will never get out of bed again. That's stark but that's the reality. And as we know as clinicians, once these patients end up in bed bad things start to happen to them: pneumonia, bed sores, pulmonary embolism and clots, generally debility, muscle wasting. It's a horrible thing. So we really from a system-wide health system level need to try and approach these fractures as what they are, osteoporosis, and find ways to get these patient treated. Andrew Schorr: All right. So I'm going to let you be on your soap box for a minute about the patients or just healthcare consumers who are listening, people like Carole but maybe who haven't taken the step. What should they be doing now to understand the risk. At a high level, because we've talked about a lot of the details, that next conversation with their doctor or the appointment they make so that this get addressed for them. And we of course talked about the website that they can go to and do the questionnaire tonight. But as far as that next meeting with their doctor, what should they say?

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Dr. Shuhart: Well, if they're truly concerned I feel like they have to speak to their provider at a level where the provider can communicate with them and that they can get what they need. So literally to model the words, Doctor, I have to tell you I have real concerns about my bone health and my risk for fracture and here's why. And that's where your doctor should pause and let you speak. And as you speak your doctor, your provider should be taking in the information that you have in your heart and your worries and concerns and start to use the analysis in the computer that the healthcare provider has in his or her head to translate that into risk that we can understand scientifically. And it would be a beautiful thing for at the moment, you know, more and more doctors and other healthcare providers have access to computers and internets in the exam room with patients. It would be a beautiful thing at that time for someone like Carole as they talk about this with their primary care provider for instance, for the provider to know about the FRAX model, to be able to pull up the FRAX model right in front of the patient and say, you know what, let's look at this, and let's understand your risk. Let's see where you fall, and then let's talk about a plan. And whether that plan involves something simple like modifying your calcium intake, vitamin D supplementation which we've already said is sort of standard for everybody, everybody should be getting that, or whether we need to go and further assess risk. Do we need to in a 57-year-old woman who is three years post menopausal do a bone density test because her mom fractured her hip at 71, like Carole, or 70. And really connect with the patient at the time of the visit to show the patient that they're concerned. It's really important for the doctors to get connected to the patient and respond to the patient's concern. When the patient brings it up genuinely and using the words of, Doctor, I'm concerned, can we talk about it this, I would say most good primary care doctors would take that time. And if they can't deal with it at the moment, for instance the patient comes in for a high blood pressure check and their diabetes check and the half an hour is up, we all have time pressure, to say to them, you know, you're right. This is really important. I'm going to get you back in the next week. We're going to run the risk model. We're going to see what we need to do, form a partnership and try and move forward from there. Andrew Schorr: Great advice. Now, I just want to mention in the other programs in our series we're going to talk about how you can get help to fight osteoporosis. Lots of resources, we're going to talk about them, give you some specific resources, more advice about diet and exercise. And as we mentioned with Dr. Mease we're going to get, in a third program, much more in-depth information about medications to help you further things you can do and also where research is headed. Dr. Mease, your dream is that this is no longer a silent crisis and hopefully one day

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won't even be a crisis. Speak about that for a minute as we wrap up our program on what role an empowered patient can have in making this change. Dr. Mease: Because this condition is silent until the fractures start occurring, it is so important for patients to take control and help steer the management. Because unfortunately many doctors, as Chris has described, will just not take the time to explore this particular aspect of a patient's health. They have other issues that seem more front and center, hypertension, diabetes, screening for cancer, etc., and so it's critical that the patient themselves become educated and take control of this conversation. So I'm completely with Chris Shuhart in this regard, and I really appreciate hearing the way he spoke about the nature of the doctor or healthcare practitioner relationship with the patient and the quality of a conversation because I think that having a good quality conversation is critical. Then spreading awareness to other people as well, to sisters, to friends. In the Washington Osteoporosis Coalition in our state many of us are involved as well as concerned patients and other people, to spread the awareness about osteoporosis as a problem. We do bone density screenings at health fairs. We teach about dietary intake of calcium and vitamin D. We do a lot of things to just kind of get the simple message out to the public that this is a real problem. But I think it all comes back to one of empowering the individual patient to become knowledgeable, to use the internet, to have conversations, to read and understand about this problem because so much of it is preventable. Andrew Schorr: Right. You gentlemen have been so eloquent. And then we have Carole Clarke who is really a model. Carole, what would you say to other women, maybe men? You have your walking group. I imagine you talked about it when that friend had the hip fracture back in the trip to New York from Seattle. What would you say to our listeners today so that they put this on their radar along with those other things, you know, cholesterol and blood pressure, where they make this important too? Carole: Well, Andrew, I think you made a great point in the beginning or someone did that one out of two women and one out of four men over 50 have a fracture that is due to osteoporosis. And that all of us are living longer and want to live well when we're young--be young as we get older, and so I think that the important thing is to find, first of all find a good doctor, what Dr. Mease called a bonehead, somebody that really is interested in this issue. And go ahead and take that FRAX and take it in if you need it to get him talking about it or her talking about it. And then hopefully get a T score by having a bone density. And then do whatever it takes to get a routine of taking care of your bones. Just like you would know your blood pressure, your BMI, you want to know your T

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score, your FRAX score so that you know all about your bones. And all the things that are good for your heart are good for your bones, like really exercising well. Really, those of us that keep fighting weight, the Weight Watchers diet where you're required to take three glasses of milk or three sources of calcium is a great way to do it. So you can take care of yourself. And then finding exercises that help with your posture and are weight-bearing will help. Then I think just keeping up because the research keeps changing and having a doctor like both of these doctors who keep up with the research that you can ask questions about, see your alternatives but then make your decision. But just as you're trying to do, Andrew, with your organization is being proactive as a patient but also realizing that it's something that will happen to so many people if we don't take action, even that young woman that's so smart that she's looking at it young and has a better chance. But I was encouraged to hear that even after a break, even at my age if I were to have one, that there are steps they can take so that you won't have the next one. And I think that's important to get the treatment and protect yourself from all the things that people pointed out can happen due to this. Andrew Schorr: Great information, Carole. I want to congratulate you on all you do, and I know the doctors thank you for being with us. I want to mention to our audience that if you have questions or comments for upcoming programs or any time just send them to this e-mail address: [email protected]. Carole Clarke, all the best to you. Enjoy your continued walks with your friends. And I want to thank Dr. Philip Mease from Seattle Rheumatology Associates and director of the rheumatology clinical research program at Swedish Medical Center in Seattle. And also Dr. Christopher Shuhart, medical director of the Swedish Physicians Bone Health and Osteoporosis Program. You can hear how passionate they are. Look for our other programs. We appreciate your comments, suggestions and questions. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all. Thanks for listening to our programs brought to you by the Washington Osteoporosis Coalition made possible through educational funding from Amgen and Novartis. Good night. Please remember the opinions expressed on Patient Power are not necessarily the views of Washington Osteoporosis Coalition, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Documents

What's Your Risk For Osteoporosis? November 3, …cdn.patientpower.info/p2docs/transcripts/WOC110309.pdfWhat's Your Risk For Osteoporosis? Webcast November 3, 2009 Philip J. Mease,