keeping your bones strong for life june 10, 2010 julie...

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Keeping Your Bones Strong For Life Webcast June 10, 2010 Julie Carkin, M.D. Kori Dewing, M.N., R.N., A.R.N.P. Bonnie 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 people of all ages. What did can you do now to ensure strong bones for life? If you've been diagnosed with osteoporosis can you still strengthen your bones? Coming up, two leading osteoporosis experts and an osteoporosis patient. We'll discuss how to maintain bone health for life. It's all next on Patient Power. Hello and welcome to our live webcast on osteoporosis. It's our third program in our Keeping Your Bones Strong For Life series. Really, I'm so delighted that we have this special edition series, and we want to help you avoid osteoporosis, to know your risk, do what you can to prevent it. If you're dealing with osteopenia or osteoporosis we want to help you get the right care for you. So we've been learning from our two previous programs that are on patientpower.info/strong bones, and we'll hear more tonight, that osteoporosis really affects millions of people, and many more are at risk. Unfortunately, it's not what we talk about that often with our doctor. Maybe when you get really much older you think, well, that's more of a significant issue, but it's something we all need to think about. I need to think about it even with my teenagers. My teenage daughter, who doesn't like to drink milk, doesn't get out in the sun that much, doesn't do that much exercise, has a really limited diet, is she building up the bone mass and strength that she's going to really need to depend upon for her whole life? And what about if you're older? What about middle age? My wife is now concerned about it, and she's 50 years young, you know, but now she's really concerned about it, and what about as she gets older. And what about if you have already had a fracture? Is that a big red flag? And really what we're talking about is preventing fractures because certainly if you have fractures and can have them--I've even interviewed someone who had one turning over in bed or someone else sneezing, imagine that, and then you have a fracture. If it can happen so easily, what does that mean for what you can do in your life? And for an older person if you have a fracture like a hip fracture does that mean loss of mobility and unfortunately can even lead to your demise. We don't want any of that to happen. Fortunately there

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are a range of medicines, prevention, lowering your risk if you have osteoporosis, so much more to do, even a new medication just approved a week ago or so as we record this live program. Bonnie’s Story Let's meet someone who has thought about all of this as a patient. Bonnie joins us from Seattle. Bonnie was a pretty high-powered business executive, working in business for 30 years, then she retires, getting herself in even better shape. Bonnie, you were really enjoying jogging, right? Bonnie: Yes, I was. Andrew Schorr: So how much running were you doing? Bonnie: For a while I was probably running--and I was doing a combination of running and brisk walking, maybe five or six miles a day, every other day. Andrew Schorr: So a lot. So then you go on a trip to national parks with your husband, Bryce--your husband, excuse me. You went to Bryce National Park in Utah, Zion, and what happened hiking? Bonnie: Ah, let's see. In September of last year while jogging or coming home from jogging on a blustery day here in Seattle I noticed that my hip was hurting, and I thought I could work my way through it with stretching and exercise, and I kept trying to jog and it was really quite difficult for me. So I gave it some bed rest, so to speak, and my husband and I went through a month-long mild hiking trip through the national parks. While hiking I tried using walking sticks, and to make a very long story short, by the middle of the trip I had to buy a cane and by the end of the trip we were staying in a lovely resort and I had to ask for a wheelchair. We came home and of course I went to see an orthopedist, and it turned out I had a stress fracture in the hip. Andrew Schorr: Now, we should mention you were already under the care of a rheumatologist, who we're going to meet in a minute, because you had been diagnosed previously with rheumatoid arthritis. Bonnie: Right.

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Andrew Schorr: And then from a workup it was also identified that you also had some osteoporosis, correct? Bonnie: That's correct. In early 2004, I think it was, I was formally diagnosed with rheumatoid arthritis, and a subsequent test, a bone density test at the same time showed that I also had the beginning stages of osteoporosis. Andrew Schorr: Now, when you were told about osteoporosis--because rheumatoid arthritis can strike people younger, and it's an autoimmune condition and it's pretty serious. Fortunately we have newer, better medicines that have made a big difference for so many people, I know you too, so you were able to be active. This word "osteoporosis," did you think that was right for your age, or did you think that was like an old lady's problem? Bonnie: You know, I guess I did think it was for older women. I am a very tiny person, small boned and petite, so I knew I had some risk, but I didn't really expect to be diagnosed with osteoporosis. Andrew Schorr: But of course diagnosis is one thing, fracture is another. So did you make the connection? It took you a while, didn't it, the hip pain and then the fracture, that osteoporosis was the bad guy? Bonnie: Yeah, it definitely took me a while. I thought I was doing everything I was supposed to to stay strong and keep in shape and keep my body going, and here I come home and after a while can't even walk. And I hadn't fallen or anything like that, so it was clearly shocking to me. But I got through that as well. Andrew Schorr: Right. And we should tell people you are an active person enjoying retirement once again, correct? Bonnie: Oh, yes. Yes. I was on crutches for four months, which was a really long time, but then I began exercising again, and I'm back to a daily workout routine. Andrew Schorr: All right. Although I understand you're hesitant to jog. Bonnie: Yeah. Yeah. I am very hesitant to jog or skate.

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Andrew Schorr: All right. Well, you've made some adjustments. We're going to talk about that. And also you're on some medicines to try to give you bone strength, correct? Bonnie: That's correct. When the osteoporosis was first diagnosed I went on Fosamax, and I was on that for close to five years, and when the hip fracture was diagnosed I went on Forteo. Fractures: A Warning Sign Andrew Schorr: All right. Well, let's meet a doctor who has been your partner through all you this. You've had a regular relationship with a rheumatologist for a number of years now, and of course she helps you with your RA but also osteoporosis and knowing that you have had a fracture a lot of attention to try to prevent any more. Let's meet her. That's Dr. Julie Carkin, who also joins us from Seattle, and she is at the Seattle Arthritis Clinic, and she is also the medical director of osteoporosis services at Northwest Hospital and Medical Center. She's also on the clinical faculty of the University of Washington. So, Julie, first of all, if someone has a fracture that's a big red alert, isn't it? Dr. Carkin: It is, and not all fractures occur because of osteoporosis, but whenever a fracture occurs it's a signal event that you should be evaluated. Was this a fracture that would have happened to anyone because it was sufficient trauma, like a motor vehicle accident or a fall from a ladder that was high enough that an 18-year-old sturdy boy would have fractured, or was is it something that we call a low-trauma fracture or a fragility fracture? So any fracture is a good time to take a step back yourself with your medical provider look and see if there's anything that can be learned about your bones or certainly anything that you can do better. Lifestyle Changes Andrew Schorr: Now, I've alluded to treatments, and it was mentioned by Bonnie for instance she's on different treatments. Where are we now if someone gets to that point where their bones are more fragile, where as far as medicines you can help them to try to avoid future fractures? I know we're going to talk about other things to do too, but as far as medicines, and I mentioned a new one was just approved, as far as your tools, if you will. Dr. Carkin: I think maybe to clarify the journey that Bonnie has been through and also for me to give her some amazing kudos because she's been an amazing person. She is so motivated, and I think her story is a good one and it brings out some good points.

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When I first met Bonnie she had just had a bone density scan from another provider and the symptoms of rheumatoid arthritis had appeared around the same time as she had gotten her scan, and we were focusing on her rheumatoid arthritis but she, being a very motivated and organized patient, had provided me with a copy of her bone density scan. And she had been started on Fosamax, which the generic name is alendronate, by another provider, and that's a common first-line agent, one of the most effective agents that we have. Pretty convenient, in that it's a once-a-week pill, and she had been started on that medication. And Bonnie and I decided we were going to have to focus for a few months on her rheumatoid arthritis which was new and there was a window of opportunity to treat that, but we kind of kept on a parallel path of looking at her bones. First off, her bones were a little lower than I would have expected for someone who is basically healthy, and we went through her risks, and one risk was that she had been a smoker for a number of years but about a month before I met her she had already quit. She was making a lot of lifestyle changes, so that's one of the first kudos to give to Bonnie is that she had been making changes that are good both for--stopping smoking improves both her bones and her rheumatoid arthritis, and it's hard to quit smoking, and good job, Bonnie. Andrew Schorr: Yaay. Dr. Carkin: So she had done that and then she was on the Fosamax, and we did a variety of blood tests and some urine tests just to make sure that the reason that she had low bone density on that initial bone density scan was indeed that it was just from the smoking and being a Caucasian, very small stature and that there wasn't anything else that we could find that would be reversible and that could be treated differently. So we actually found back in 2004 her vitamin D level was a little bit low. It was 27.2, and we really like vitamin D levels to be in the 40 to 60 range, so we normalized that. And we'll talk later in the program, I'm sure, details about how there's lots of ways one can do that. She really worked hard on her calcium and vitamin D because it doesn't matter if it's estrogen, Fosamax, the brand new med that came out last week called Prolia, or denosumab, or any of the meds, none of the osteoporosis medications will work unless you have adequate calcium and vitamin D. The calcium and vitamin D are the bricks and mortar, and whatever drug you and your care provider choose is like the brick mason. And you would not want to pay the brick mason a hundred dollars to stand around your house and not give him any supplies to work with. So she did all the right things of getting the foundation laid, stopping smoking, changing lifestyle things, doing calcium and vitamin D, and then she was taking her Fosamax correctly, which is another issue is that all of the oral bisphosphonate

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drugs, Fosamax, Actonel, Boniva, any of the oral bisphosphonate drugs by nature are very poorly absorbed, and so if you don't take them on an empty stomach with a glass of plain water and wait at least a half hour, and then for Boniva you have to wait an hour, if you don't take them correctly you don't absorb them and there's no way they could work. So Bonnie paid attention to all that, she did everything correctly, and in fact her bone density improved nicely. She had several bone density scans, one in 2005 and then 2008, and her bone density improved. She was making progress but I think her case is illustrative of the fact that the drugs for osteoporosis are very effective, but the most effective drugs decrease your risk of fracture by only about 50 percent. So like on Fosamax the data is about between 35 and 50 percent decrease risk in hip fracture, and then depending on the type of spine or vertebral fractures it might be able to decrease it 60 to 75 percent. So it decreases your risk of fracture, but you're not guaranteed that you won't get a fracture. So if Bonnie had not done all of that between 2004 and 2009 she may have had a more serious fracture or she may have had more fractures. So I actually think that her treatments from 2004 and 2009, mainly because of her hard work, was very successful. We wanted zero fractures was our goal, but she had a relatively mild fracture that didn't need to have surgery and that she's back to being functional. Calcium Andrew Schorr: Okay. Now I want to introduce our other rheumatology guest, and that's rheumatology nurse practitioner Kori Dewing who is also in Seattle. She's at Virginia Mason Medical Center. Kori, you've been at this a long time too. Help people understand about building bone when you're younger that you're going to count on when you're older. I mentioned about my teenage daughter, and I know we have a question that's come in about that. A mom is struggling with a daughter, trying to get her to eat right, do all the things that will build that. Tell us about building that so we hopefully don't get to this point. Ms. Dewing: Hi, yes. Thank you. That's a good question and it's one I address regularly with my patients. As we--when we're born we have low bone mineral density, and as we grow and age it builds up and hits a maximum in about our 30- to 40-year-old range, so we have a unique window in our youth to help build up our bone. And then from that point on we slowly lose bone over time, so it is important when we're young to focus on getting enough calcium and vitamin D in our body to help allow or give the bricks and mortar, as Julie explained, to be able to build up our bones. Andrew Schorr: So, Julie, you have this analogy about a bank account. I'd love to have you explain it here.

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Dr. Carkin: Yeah, I do use that and actually probably overuse it, as my friends and patients will attest, but I do think it's helpful for me to think about bones this way is that in general, like Kori just talked about, you make deposits to your bone bank account and you can really make some progress up until you're about 35. And then after that if you're lucky enough to be healthy and you're not on steroids for rheumatoid arthritis or for asthma and you're not on antiseizure medicines that drain your bank account, most people, women and men that have normal hormones, the women with their normal estrogen, normal menstrual periods and men that have normal testosterone, most people maintain their bone bank account up until something else happens. And in women that next big event is menopause because all women when you lose your own estrogen or when you stop taking estrogen replacement, when estrogen is gone there is a relatively rapid five-year sort of dramatic loss of bone, and so a lot of times when--the bone bank account analogy is most helpful for me and my patients when there's women who are 52, 54 years old and they are relatively new, just starting menopause, and we're trying to figure out do they have--since we know there's going to be a period of time, three to five years when they are losing bone do they have enough bone in their bone bank account that they can weather that. Do they have A-plus bones and they can lose 15 percent and they're going to go to still be at a B or B minus, and bones are pass-fail, are we at that point? Or do they start off with low bone bank account and then if that's the case and they have a low bone bank account we do not want any what we'll allude to as unauthorized withdrawals. We want to maintain what they have. Exercise Andrew Schorr: Now, Kori so the question is we talked a little bit about calcium and vitamin D, this bricks and mortar. A lot of people have seen publicity about exercise and exercise is important for health, weight-bearing exercise you've heard about. So what are recommendations you make to people to do for themselves? So for people listening, they say, okay, I want to lower my risk of losing bone into this danger zone, I want to prevent a fracture, what are things that I can do myself? Tick them off for us. Ms. Dewing: All right. Well, certainly there are some things that you can't change, unfortunately. One of those is age. Another is our gender. Family history also. We can't change our parents though some of us would wish, as well as race, ethnicity plays into it. But there are some things certainly that we can do and those lifestyle changes that Julie alluded to. So if you're a smoker, stop smoking. If you drink excessive amounts of alcohol, that can also rob your bones of essential nutrients.

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But in addition making sure you're getting sufficient vitamin D and calcium, and although we can't measure how much calcium somebody is receiving or that they're receiving enough calcium, there are recommendations. For adults under age 50 the National Osteoporosis Foundation recommends 1000 milligrams of calcium, and for those 50 and older 1200 milligrams of calcium. So making sure that somebody is taking enough calcium is important. And also vitamin D. We do have the ability to measure the serum level of vitamin D and ensure that somebody is taking enough vitamin D, and the goal level is between 40 to 60. Other things that people can do, certainly exercise was discussed, and weight-bearing exercises are important. Certainly maintaining a healthy lifestyle, maintaining exercise throughout our lives is very important, both to help build bone but also to help build strength and prevent falls. Andrew Schorr: Let's talk about that for a minute. Julie, you've talked to me about balance. So somebody who is 60 years old doesn't really feel comfortable in lifting weights but they like to swim or they like to walk. That's to the good, right? Dr. Carkin: It is. If a patient asks me the question what's the best exercise that I can do that will increase my bone density the answer to that is probably weight-bearing exercise, silly things like putting bricks or a book in a backpack and jumping up and down for 45 minutes or basketball or tennis, kind of a load-unload type of exercise. But usually, instead of answering that question I usually spin it around to refocus on what our goal is. The only reason that we care about the bone density, these DEXA scans that have been talked about in the prior programs, the reason we care about bone density is the bone density is kind of a surrogate for looking at what our end goal is. You know it doesn't really matter what your cholesterol level is if you knew that you were never going to get a stroke and you were never going to get a heart attack. Those are what you're trying to prevent, and you're using cholesterol as a surrogate and what we're talking about this evening is we're using the bone density as a surrogate. And so I usually turn the question around to my patients and friends and say, well, why don't we ask the question, what's the best exercise to prevent fractures. And even though it's true that some of this load-unload, basketball, tennis, jogging, even those exercises are better and you'll probably gain a few points, a few percentage points in bone density more than you will with swimming or yoga or tai chi, the good news is that tai chi, swimming, yoga will prevent fractures as well as tennis or basketball. So if you're someone who can't or doesn't enjoy a classic weight-bearing exercise or you have some arthritis that prohibits you from doing that, if you can have good, strong muscles, good balance and prevent falls, that's probably the key to explain why both types of exercise are equally effective at preventing fractures is, if you don't fall can have pretty low bone density if you don't fall and get away with it.

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The FRAX Tool Andrew Schorr: Okay. Now, Kori, we talked about DEXA scans and Julie just mentioned it. That's also this FRAX tool. What is that, and where does that come into play when people come to see you? Ms. Dewing: So my role as a nurse practitioner really is in education and helping patients to understand their risks and helping them to make decisions about their treatment. So the bone density test, as has been discussed, is a test that can help us understand somebody's risk for fracture. But a few years ago the World Health Organization developed the fracture risk assessment tool which is called the FRAX, F-R-A-X. And we use the FRAX to help us determine a patient's ten-year risk of fracture. So for those of you who have received a bone density report you get a score, a T score, and it's a statistical term, and it's hard to really relate that into the real world and for patients to understand really what that means. This fracture risk assessment tool helps us to really give a number or a risk to explain to the patient what their risks are for fracture. It takes into account things such as height and weight, so whether somebody is a small-framed person for instance. And ethnicity. It takes into account their gender as well as some other causes that can contribute to bone loss or increased risk for fracture. And with that information we can quickly calculate based on data that has been gathered through the years about epidemiology, we can calculate somebody's ten-year risk of fracturing, which can then help us decide whether or not somebody needs pharmacologic therapy or treatment for osteoporosis. Andrew Schorr: Okay. Well, I think what we'll do is we're going to take a little break, and when we come back we have many questions already and we invite your questions if you're listening now and we're going to pose these to experts. We're going to fire some to Bonnie as well. Remember, you can call us at 877-711-5611. 877-711-5611. Or sends an e-mail to [email protected]. You're listening to our special edition program Keeping Your Bones Strong For Life. We've got more advice for you as we continue in a minute. And we are back on our live webcast. We welcome your questions. First of all, I want to thank our sponsors who help make it possible, that's Amgen and Novartis who made an unrestricted educational grant to the Washington Osteoporosis Coalition. We've done a series of programs now. Take a look at the library. Just go to patientpower.info/strong bones, share it with your friends, share it with your parents, your children. Everybody talk about this because, you know, it is really bad when you start getting fractures and fracture easily, and it really puts a real stopper on your quality of life, and also particularly in older people if you were to

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have a fall and a fracture you may never recover. So we don't want you to get to that point where your bones are that weak, and we don't want to have that lead to your really downhill slide. So we're talking about how we can prevent that. Some, if you are identified, we talked about the FRAX tool just a minute ago, identifying where you are and what needs to be done to try to lower your risk of fracture or how to just keep a lot of that bone strength in the bank account that Julie Carkin was talking about just a minute ago. Just to review who our guests are, Dr. Julie Carkin is from the Seattle Arthritis Clinic, and she's also on the clinical faculty of the University of Washington. She's a rheumatologist, and she's at Northwest Hospital and Medical Center on the north side of Seattle. And then we have also with us from right in downtown Seattle at Virginia Mason Medical Center Kori Dewing, who is a rheumatology nurse practitioner. And living it, joining us from Seattle in her retirement, active retirement years now is Bonnie who shared the story of jogging and visiting national parks and then having hip pain, and it turned out to be a fracture. She knew she had osteoporosis. She never expected that pain was a fracture and probably attributable to osteoporosis. But she's taking medicines now. And, Bonnie, how do you feel about things now? Obviously you're living with an autoimmune condition, which fortunately in recent years can be controlled so much better, RA. How do you feel about control of your osteoporosis? I know you said you're a little fearful almost of running, but you're getting active again. How do you feel about it? Bonnie: Well, you know, no one likes to know they have a disease. You know, you just don't want to hear that, but, that said, I don't think it's restricting me very much at all. What Julie said that I really liked, an exercise program that assigns you a task that you're not going to do doesn't do much help. And so picking exercises and doing the kinds of routines that make sense to me make me feel like I'm in control of this disease. Listener Questions Andrew Schorr: And first of all, congratulations again on quitting smoking. We're hearing that smoking is the bad guy in lots of things. I never thought about it related to bones, but now we know that too. So congratulations on that. Here's a question that came in. I'm going to address this to you, Julie. This came from Gail in Kirkland, Washington, outside Seattle. So Gail is just a young 74 years old. She's not taking any hormone replacement. She says, "Is there anything that can strengthen my bones at my age without the use of Boniva," no disrespect to Sally field and all the commercials, but without taking drugs, is there a way that she can actually add bone mass or bone strength, or is it just that she's got to be more cautious at age 74 and that's her lot in life. Just don't trip. Julie?

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Dr. Carkin: Yeah, this is Julie and, well, Gail, I think there are some things that you can do that would be helpful. And the first thing I think is that I don't think you should be more cautious and get used to your lot in life. I think that you should with whatever your bone density is--and I think your primary care provider or your specialist can look with you at what your bone bank account is, and it may be that your bone bank account is not that bad, or there may be something that you can do with calcium and vitamin D, or they maybe could--there's a lot of pharmacologic treatments currently. There's many more options than there used to be so you could at least hear what options there are and suggestions. Knowledge is power. And you're the boss, and if it doesn't feel right for you to take any kind of pharmacologic treatment really optimizing your calcium and vitamin D and then working on your strength, your balance, your fall prevention. Flexibility, I know I'm a lot less flexible now than I was ten years ago. You try to tie your shoes first thing in the morning and you certainly notice that, but if you're a little stiff leaning over to tie your shoes and you're a little unbalanced, that's also a good indication that you have a slight increased risk also of falling. So working on your strength, your flexibility. But I would encourage really finding a medical provider that you feel comfortable with, assessing your risks, both your strengths, you know, what are your strengths, what are the weaknesses, and look at your options. Andrew Schorr: Okay. Kori, we talk about this a lot. I think in people's mind they think it's just women. And I was talking about, thinking, my teenage daughter and I mentioned my wife, haven't talked about myself, and we have almost 200,000 men a year who are diagnosed with prostate cancer, and some of them have suppression of their testosterone. Are there men in those situations and maybe when men get much older too when we have to see osteoporosis risk in light of men as well. Ms. Dewing: I think that's a myth. A big myth in our society is that men don't get osteoporosis when in fact we know that about 13 percent of men over 50 will suffer an osteoporotic fracture. That's a higher number than the amount who will get prostate cancer over age 50. Andrew Schorr: Right. Ms. Dewing: So it is a big deal. And I recommend that men over age 65, 70 do talk to their provider about the risks of osteoporosis, and certainly if they've suffered a fracture, as mentioned previously, that is certainly a red flag that needs to be addressed and evaluated.

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Andrew Schorr: Okay. Well, and then Julie, I'm right, that if a man is taking some drug to suppress his testosterone, even younger, that could cause effect on his bones, correct? Julie? Dr. Carkin: Yes, actually I was trying to interrupt there just because I feel so passionately about that this--the name of your program is Patient Power and I think you've hit on a key point, that men are discriminated against when we're thinking about osteoporosis because we're not suspicious enough, we're not proactive enough as a medical community at taking care of bones for men. So if there are any men listening or women who have men in their life, especially if they're being treated for prostate cancer or they have some other medical problem where they don't have normal testosterone, they do not have their main protection for their bones. And there's many medications for osteoporosis that have been tested in men, and they don't have to lose bone density. They also have a bone bank account, and if they take their prostate cancer meds that they need to save their life but it blocks their hormones they will develop osteoporosis and fracture, and it will affect the quality of their life if not the quantity of their life. And there are preventive medications. And oftentimes the primary care provider or urologist are so busy and focused on trying to treat the prostate cancer that preventing the bone loss gets lost in the shuffle a little bit. So that would be a very good one for men to advocate for themselves or for other people in their life to advocate for these men. Andrew Schorr: Kori, you know, all these words, osteopenia, osteoarthritis, osteoporosis, we know it means within but it's kind of confusing to people. And we got a question from John in Wenatchee, Washington. He says, "Is osteoarthritis linked to osteoporosis? What's the difference?" Ms. Dewing: Well, this is certainly a question that I address on a daily basis. Working in rheumatology I work with patients who have both osteoarthritis as well as osteoporosis, and it's very confusing. Part of the confusion is just in the terminology. The word osteo means bone. So osteoarthritis is a joint disease that is caused by cartilage loss in the joints that can cause pain and stiffness, and it's the wearing out of the joints in the body. As we've learned, osteoporosis is different. Now, that's a skeletal disorder characterized by compromised bone strength, and this predisposes a person to an increased risk of fracture. So it's the weak and brittle bones that can create the risk for fracture. We're talking about fracture, whereas osteoarthritis is a condition that causes pain in the joints. So I think there's the confusion, and it is possible for patients to have both.

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Andrew Schorr: Julie, I want to understand genetic or family connection. So we had a question, actually we've had several, people say, oh, my sister or my mom was diagnosed with osteoporosis. I'm trying to know is that going to be for me. So where does sort of family connection come into play to increase your risk? Julie? Dr. Carkin: That's a good question. Used to be that when Kori and I first started taking care of patients with a lot of osteoporosis and working on both health issues we would ask a whole host of the questions about family history and did anyone in your family have osteoporosis etc. And as time has gone on with the FRAX tool that Kori mentioned, the World Health Organization fracture prediction model, and looking at years and years of data from around the world about what's the most important genetic issue related to osteoporosis, and it really boils down to one main question: Did either your mother or your father have a hip fracture, a low trauma fracture? So not a car accident, not falling off the roof, but did either your mother or father have a hip fracture. And that by far is the biggest red flag or indicator. If that's the case--that's actually a specific question. If you look at if you just Google or Bing FRAX, F-R-A-X, or World Health Organization fracture prediction model, you'll see that that is actually a question on the FRAX. We of course ask other questions. You know, if a person's two sisters have osteoporosis that's also a clue or if other people have problems, but the biggest thing is whether your parents, either mom or dad, have had a hip fracture. There's lots of other genetic things that are intriguing. Especially the Northern European, the English, Scottish, Irish, if you look at people in Scotland, England, Massachusetts, the same type of genetic, Minnesota, Seattle, there's very similar genetics for like vitamin D receptor and how well a person absorbs vitamin D and therefore how much vitamin D they might need. So there's lots of genetic information as how it interrelates with osteoporosis, and we're getting more all the time, but it's nice that there's sort of one main simple question, did either your mother or father have a hip fracture. And spine fractures are also very important. If your mother had three spine fractures and had what they call that dowager's hump and is tipped over, that's also likely a significant risk for you, at least to factor into your evaluation. Andrew Schorr: Okay. Here's a question, Kori, that we got from Sharon in Vancouver, Washington, not Vancouver, B. C., and like me she worries about her daughter. She says, "My daughter is 19, very small framed. She's never been a milk drinker and probably doesn't get near enough calcium. She won't take any supplements. Do you have any suggestions that can help with this age?" Maybe parenting advice too, but do you have any suggestions for Sharon?

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Ms. Dewing: I think that is a big concern for parents as well as for just the general health of our nation. There is a concern about the amount of calcium that our children are getting. It is a problem. Certainly there are dietary sources of calcium, and we know at that dairy products are the best but also green vegetables such as broccoli may also have it. We know that there are calcium-fortified foods like juices or breakfast foods. Now there's even some sodas that have calcium in them as well. So there are different products that are available that she could perhaps sneak the calcium into her daughter's diet. There are also supplements that are not pills. So you could take a chewable supplement for instance. I know personally I take a chewable supplement that tastes like a piece of candy. I don't particularly enjoy pills, so I'll take the piece of candy any day. So that might be something to try. And simply teaching, explaining to our teenagers why it's important. You know, teenagers notoriously feel very invincible, and they don't think about the future, and that's part of being a teenager, but our role as parents is to help bring them to adulthood safely. Andrew Schorr: It's tough. Ms. Dewing: Yeah, it's very tough, but I think teaching them, letting them know, letting them make their own decisions and helping them be part of that decision, it's a challenge. Andrew Schorr: I've got another question for you, Kori, and this is sort of on--as Julie said, we call our program Patient Power, so to put this on the radar, on the agenda for your discussion with your doctor, let's say primary care. You don't have a clue whether you're at risk for osteoporosis, whether your bones are thinner, you just don't have family history, etc., you don't know. And you go and maybe you talk about migraines or maybe you talk about other family members, you maybe talk about the flu shot or whatever. Where should this be in your agenda sometime in your visits with your doctor to just say, do I need an assessment or what is the result of the assessment or if you've had one when do we revisit it. Help just coach people through that part of the dialogue with their provider. Kori? Ms. Dewing: Certainly. I tell my family that they really need to be their own advocates and they really need to ask questions, and I think this day and age the medical field really expects patients to be partners in their care and to be knowledgeable about certain health issues and health maintenance issues. It is the patients pushing us and asking us questions sometimes that makes us think about things that aren't normally on our radar, and certainly I do encourage patients to be their advocates. If patients feel that they may be at risk, if they have risk factors for osteoporosis, family history, if they smoke, if they drink too much alcohol, if they take certain

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medications or they have diseases that may increase their risk for osteoporosis, these are things that they may need to bring to the forefront to their provider to clue in that maybe they should ask for a bone density test or at least talk about the risk of osteoporosis. Talk about a FRAX tool. Even ask their provider if they're familiar with the FRAX and would they be willing to calculate it, because you can calculate it without a bone density test result. So there are certain just talking points. I think everybody should ask their provider about if they're taking the right amount of calcium or vitamin D and are they getting enough vitamin D. Certainly here in Washington state the majority of us are not, and we can test that in our blood. Andrew Schorr: All right. So, Julie, so you're a specialist as is Kori, so people get to your rheumatology department for a variety of reasons. When someone is diagnosed with osteoporosis then, tell us about how you follow them and what sort of medications come into play, you mentioned this earlier, and how you decide what when. Dr. Carkin: I already talked a little bit early on when we were kind of going through the journey that Bonnie has been through, we talked about the importance of not just saying, okay, you have osteoporosis and go on this medicine. She was on a medicine, and it turned out that there really wasn't another--other than her vitamin D being low there wasn't another cause for osteoporosis in Bonnie, but in some people once you get your bone density scan it's good to have the provider take a step back and say, okay, is there anything else at play. People with multiple myeloma. People that have malabsorption. People that have celiac sprue. So just do they have regular run-of-the-mill osteoporosis or is there some other metabolic issue or something that would be handled a little bit differently. And then a person goes on the treatment, and we usually follow them by bone density scans. The bone density scans are very low radiation, very safe, easy, comfortable tests, and such a low radiation that it's similar to just the amount you get from flying across country and one tenth of one chest x-ray. So it's a safe test. It's pretty inexpensive. Right now actually Medicare is only reimbursing about $76, about $100 test to your insurance. And so we usually get that in about two years. Sometimes you can see changes in one year but oftentimes that's in about two years. And we make sure a person is not losing bone density. Either stability of your bone density or improvement would be success. If you're losing we usually go back to say, hmm, is there something else going on? Is the person really able to absorb their calcium and vitamin D, or maybe they're not taking their medicine correctly. So we follow them that way, and in Bonnie's case she had been doing everything right, she was improving bone density, and she had been using Fosamax, which is alendronate, which is one of the many what we call antiresorptive agents, and so all

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of the medicines we have with the exception of an injectable medicine, Forteo, all of the medicines, including the brand new one from last week, stop bone loss. So even though Sally Field says that I gained bone on Boniva, yes, she probably did, I'm not doubting that, but the reason she did was not necessarily the Boniva. It was that the Boniva, just like Actonel or Fosamax or like estrogen or like the IV Reclast, all of those medicines stop bone loss and let your own body build bone. And so in a patient who is on the program with us today, Bonnie, she had already stopped bone loss and she was--she had gained what bone she really could gain and we were maintaining, but despite that with how active she wanted to be and maybe going from one mile to six miles in running a little faster than one would recommend, had a stress fracture in her hip, just a regular kind of run-of-the-mill, nothing atypical about the location or anything, but had a regular stress fracture. And she wants to be active, so she and I looked at things and said, well, what else in 2009, state of the art, what other things could she do. And what we decided was there is one bone-forming agent, it's a daily injectable medication that's fairly expensive. It's called Forteo. It's about $700 a month, and that medication is easy to take. You have to get it out of the refrigerator and it comes in a pen, and sort of like when people do insulin. It's a little injection under the skin with a very small needle. And people tolerate it well. You don't feel weird from it. It doesn't make you nauseous, so it's a simple medicine, but it's something, you know, having to do a therapy every single day is a commitment. But we decided in Bonnie's case that we would like to get her bone bank account up. The amount of bone that we got, we've stabilized it, but she still had a low bank account that when we made a certain amount of a demand with her running, you know, her hip wasn't up to it. So we switched to her using the Forteo, and then we'll follow that the same way that we would the other medicines. So she has not had her follow-up bone density on that drug, but we're following her clinically. She's continuing to be able to increase her exercise, get back to her normal quality of life, and I'm hoping that with her next bone density she'll have gained more bone density so that if it's a passion of hers and she wants to run she'll have that confidence back if we can get maybe 10 percent more bone density. Andrew Schorr: Bonnie, you hear that? We're trying to clear you for take-off there. Bonnie: I do. I love it. Ms. Dewing: I have an important point to add there. Andrew Schorr: Go ahead.

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Ms. Dewing: Part of the important part of following up is the bone density test like she mentioned, but also making sure that patients are still taking their medication. Studies have shown that with this class of medication in particular many patients stop these medications without talking to their providers about it. So making sure that patients continue taking the medication, teaching them why it's important as well as making sure that they're taking it correctly, because there are some very specific instructions that need to be followed to ensure that these medications can work, as well as making sure that patients get enough calcium and vitamin D. So it's a really good teaching opportunity for the follow-up visits as well. Andrew Schorr: Right. Here's a question. Julie, I just want to ask you about one drug. Deb sent in a question. She said, "My sister is already diagnosed with severe osteoporosis, and she recently had Reclast. Will that drug help stabilize bone health or somewhat reverse bone loss? Dr. Carkin: Yeah, that's a great question. So what Deb is wondering is is her sister protected with Reclast. Reclast's other name, the generic name for Reclast is zoledronic acid or zoledronate. It's in the same family as Fosamax which is alendronate or Boniva, which is ibandronate. So it's that same family of a bisphosphonate, but the difference with Reclast and Fosamax, Actonel is that Reclast is an infusion that's given once a year over at least 20 minutes. Most people get it over about a half hour, and it's very likely that Deb's sister will be protected by that. It's one of the stronger antiresorptive agents. And then of course if you're giving something by vein you're eliminating the variable about how well would Deb's sister absorb it. So an advantage of an IV medicine is that you can guarantee that you're getting 100 percent of the drug into your system and that you didn't forget and have your coffee 15 minutes after taking your Fosamax, which would interrupt the absorption. Or, as Kori made a fantastic point, none of these drugs work if you don't take them. They have quite good efficacy but that's if you take them correctly and take them regularly. So in Deb's sister's case that's one of the stronger drugs, and of course she has a hundred percent delivery and a hundred percent compliance. She got the drug so she has drug on board that will last for a year, and assuming she takes her calcium and vitamin D Deb's sister should get stability or improvement. But the calcium--it will not work without calcium and vitamin D, so that's a good thing for Deb to remind her sister.

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A New Medicine Andrew Schorr: Just one quick question. I know we could do a whole program on this. When there's a new drug added, makes is big splash in the newspaper and on TV and you don't know where to put it, so we mentioned there was yet a new drug approved a week or so ago, where does that fit in, this Prolia? Dr. Carkin: This is Julie. I'll take that one. I think that it's always exciting to have new drugs so Prolia, the name for that is denosumab, and it's an injectable medicine under the skin that will be given twice a year, and it's not something you will do at home. You would go and get it at your doctor's office or your care provider's office. It's a simple medication to take. It works in that same category as all of the antiresorptive agents, so it's not a bone forming agent like the Forteo, which is teriparatide. It's not a bone-forming agent, it's an antiresorptive agent, but what's nice about it is that it's the first biologic agent. So it's not really a chemical. It is more in the--like some of the rheumatoid arthritis fancy medicines where it is a biologic agent that interrupts bone turnover and losing bone. We're all very excited about having another option because there are people who cannot tolerate bisphosphonates for different reasons, so they're not a candidate for those. But whenever there's a new medicine, it's exciting to have another option, but it's also good to be a little bit cautious and let--step back and kind of watch the medicine for a little while, make sure that there's no surprises, make sure it's--we're all hoping it's--it's preliminary data and the data that got its FDA approval is excellent, but when it's in general use make sure that there's nothing that we didn't see in the study phase. And in general it probably will not be a first-line agent. It will be an agent where if the longer studied drugs like the Fosamax or Actonel, even Reclast, if a person cannot take those drugs or if they failed those drugs, then the Prolia, the denosumab would be a consideration for somebody like that. Take-Home Messages Andrew Schorr: Okay. Well, that's the individualized care that people can get in active dialogue. We may just go a couple minutes over. I just want to give each of our guests, including Bonnie, a chance to give us really some take-home points. So, Kori, you've been at this a long time. You see patients every day. Ideally we want to prevent osteoporosis and we want to empower people both in the dialogue and what they can do following, if they have a medicine, doing it right, doing the exercises, getting the calcium, going to Palm Springs from Seattle so they get the sun or take vitamin D. What do you want to leave people with so that they really can have as best they can strong bones for life? Kori?

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Ms. Dewing: Thank you. I think that part of this is what we've talked about. Certainly being an advocate for gaining information, knowing their risks, talking to the providers, but also making sure that they are getting enough calcium and vitamin D early in their life to help build up their bones when they can. I think all of these are very important. Andrew Schorr: Okay. But if the train's left the station and now they're 55 or 60 or even older and they said, gee, I didn't drink my milk, I didn't have yogurt and I didn't like the sun and I definitely didn't take vitamin D much, all is not lost, though, Kori, is it? Ms. Dewing: Oh, no. Andrew Schorr: There's still things to do. Ms. Dewing: Definitely, there are still things that they can do. And I think that that's where a conversation with your provider is so important to talk about your risk. What is it that you can do? Is exercise something you can do? Look at your lifestyle. Do you need to quit smoking? What can you do to help to improve your bone strength? There certainly is a lot that we can do as well as just understanding their own personal risk. Andrew Schorr: Julie, put this in perspective for us. So people know they have to pay attention to their cholesterol, and we've been hammering people about paying attention to their blood pressure. We got 23, 25 million people with diabetes, and we're telling them to pay attention to their blood readings. Where does osteoporosis fit in as far as saying, you know, I got to pay attention to that too? Dr. Carkin: Well, as far as common problem, none of us want to, heaven forbid, have breast cancer, we don't want to have a heart attack, but for women it's much, much more likely that they'll suffer from an osteoporotic fracture than they will breast cancer or a heart attack. There's 1.5 million fractures a year. It's a common problem. And it's not as urgent as chest pain. So if you're going to your primary care provider and you have angina and you have heart problems, that is going to have to take precedence because that is something that can be acute and urgent. But a fracture will change your life. Bonnie is an incredibly healthy person, and you heard her say that she was on crutches for four months. Fracture is a big event, and if you can prevent that, that is great. So I think that you want to ask your primary care provider about your bone health. If they don't have time because

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they think a priority is talking about your cholesterol or anything else, say, that's fine. I'll just make another appointment. Make a separate appointment and focus on bone health and your risk, especially if you're someone with rheumatoid arthritis, COPD, emphysema, you're on steroids for a problem, you have breast cancer or prostate cancer and you're on antihormonal therapy, you have epilepsy and you're on antiseizure drugs. All of the things I just mentioned make you more likely to have a problem and you need to be even more proactive about getting an evaluation and if indicated getting treatment. Andrew Schorr: If you have had a fracture, do not pass go, get checked. Dr. Carkin: Correct. If you've had a fracture, and this is a common--a lot of the doctors who are interested in bone health, one of our colleagues said a fracture is a bone attack. A myocardial infarction is a heart attack. A stroke is a brain attack. A fracture is a bone attack, and you need to pay attention to that. It didn't just happen and you get your hip surgery and you go home. You don't let that happen to your parents. Your father falls, he breaks his hip, he gets it fixed up and he gets sent home, and he's going to fracture again. So you want to figure out, I fractured, it's going to happen again. How do I decrease my risk of having a future fracture. Andrew Schorr: All right. I want everyone to pay attention to this for your own life but also think about it for your family members. Your children, if you have aging parents, think about it for them. We all need to pay attention to this. So, Bonnie, you've been so good in your own life in trying to get a handle on this, and also you've been listening with me today. What would you want other patients or people who hope they won't be patients to just prevent it? What would you say to kind of empower them and put them in perspective? Bonnie: I think the critical success factor for me--and let me just get to the bottom line. I love my life, and I love my level of activity, and it was a drag that I was on crutches, and I hate the fact that I broke my hip, but I'm moving on. And for me to live my life as healthy as possible, frankly, I needed to find a doctor and partner with a doctor who would help me live my life on my terms. I want to exercise. I want to be active. I don't always want to give up that nightly glass of wine, as Julie knows. So I think finding the right doctor is probably as critical as anything else, and I got lucky. Andrew Schorr: Thank you so much for being with us. So I hope you'll start running again sometime, Julie, and we can run together. I don't run very fast, but I run, and we can do that. But I wish you no more fractures.

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Dr. Carkin: And, Andrew, Bonnie is much more likely--you said you would like to wish me to be able to run. I'm lucky when I can walk around my neighborhood, but Bonnie is going to get back to running. Andrew Schorr: Okay. Okay. So, Dr. Julie Carkin, from the Seattle Arthritis Clinic, thank you for bringing your experience with osteoporosis, your knowledge, to us tonight. And also Kori Dewing, as a role, as a nurse practitioner who has devoted your life to this, thank you, and your message of patient empowerment is so important. And thank you for your work at Virginia Mason Medical Center, and both of you your devotion to the Washington Osteoporosis Coalition which has a tremendous interest in this in helping broad populations of people understand that you have to pay attention to this. And, Bonnie, all the best to you, too. Thank you for being with us. Bonnie: Thank you. Ms. Dewing: Thanks. Dr. Carkin: Thanks for having us, Andrew. Andrew Schorr: Yeah, thank you. Now, I want to remind everybody we've finished the live program now. There will be a replay, then there will be a transcript, and they'll join right on the website, patientpower.info/strong bones, those wonderful two previous programs, and this is a great resource for you, your family members, your sister who moved across the country, your husband and people with you work with and your teenagers as well. And mom and dad if they're aging they've got to pay attention to this as well. Thank you so much for joining us, and we're going to be doing future programs I hope in osteoporosis, but, as always, it's about you being a powerful patient. Remember, knowledge can be the best medicine of all. I'm Andrew Schorr. 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.

keeping your bones strong for life june 10, 2010 julie...

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