Getting Help to Fight Osteoporosis December 1, 2009 …cdn.patientpower.info/p2docs/transcripts/WOC120109.pdf · Getting Help to Fight Osteoporosis Webcast December 1, 2009 Lynn Kohlmeier,

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Getting Help to Fight Osteoporosis Webcast December 1, 2009 Lynn Kohlmeier, M.D. Douglas C. Bauer, M.D. David Peckham 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: Typically, when we talk about osteoporosis it seems like we're talking usually about women who are after menopause. Well, unfortunately they're not the only population at risk, and certainly there are some medications and diseases that can affect one's risk of osteoporosis. Coming up you'll hear from two leading osteoporosis experts as they share tips and information about how you can fight osteoporosis. Hello. I'm Andrew Schorr. Welcome to the second in our series of programs brought to you by the Washington Osteoporosis Coalition and made possible through educational grants from Amgen and Novartis. So in our first program, and I hope you've listened to it or read the transcript, we really gave an overview of osteoporosis, a very significant health concern in the United States. We're talking about 44 million people who may be affected by it. And of course we're talking about fractures, and fractures can lead to debilitating conditions where people maybe can't get out of bed. If you are older and you have fractures it may well, quite frankly, as we talked about in the earlier program, lead to your demise. Well, in this program we're going to talk about it in greater depth. We're going to talk about also some other groups that maybe you hadn't thought about beyond older women who can be affected by osteoporosis and what could be the causes of that. We even get into genetics a little bit. And then we want to help you understand what you can do. What about exercise? Does it have to be weight bearing? And we'll also talk about some special situations. For instance, like if you're taking an osteoporosis medicine should you be concerned about having dental work? Lots to talk about. I want to illustrate the situation of whether or not it's just women by introducing you to Dave Peckham, who lives in Spokane, Washington. He's 49 years old, so he is not a postmenopausal woman. But Dave, let's talk about two years ago. What started to happen two years ago? What were you feeling suddenly? Male Bone Loss: Dave’s Story Dave: Well, I was active in every way and involved in sports and exercise, and during a session of lifting weights I noticed my forearms were really painful, and it felt like

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what I thought was tendonitis. However, usually the solution for tendonitis is rest. Well, I'd rest for several weeks and resume exercise, but it would still be there. Andrew Schorr: Now, I understand later then you had pain in your back, pain in your foot, and you just weren't doing well. It became such that you had to lie down or at work just sit in a recliner? Dave: Yes. Andrew Schorr: Oh, my. That's not much life for anyone and certainly not an active guy. And you were a guy who would run and do weight lifting and swimming three miles a week so this was really clipping your wings, I would imagine. Dave: Oh, yeah. It changed my lifestyle dramatically. Andrew Schorr: All right. Now, I know you went to different healthcare providers including a chiropractor, and many people would say, well, if I have back trouble maybe that can help. That didn't help, did it? Dave: No. I tried several chiropractors to see if one of them had the solution, and it just kept getting worse. Andrew Schorr: You go to your primary care doctor, finally he says, let's do an MRI. What did the MRI show? Dave: Well, it showed lesions around on the bones as well as fractures. Andrew Schorr: Where were the fractures? Dave: I had three fractured ribs, a fractured vertebra and a fractured foot, and my sacrum was fractured as well. Andrew Schorr: You must have been shocked. Dave: Well, I knew something was going on, but I didn't actually know what.

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Andrew Schorr: Eventually you connect right there in Spokane with an expert really, in this case an endocrinologist who specializes in osteoporosis. That's Dr. Lynn Kohlmeier, who is director of the Spokane Osteoporosis Center. And we're going to talk with her in just a second, but the point is she helped you understand what the problem was. Are you doing better now with treatment now, Dave? Dave: Yes, especially the last three months. Andrew Schorr: Wow. We're going to hear more about that. Let's meet your doctor. Dr. Kohlmeier, help us understand what you found when Dave came to you, because again this was not an elderly woman. Dr. Kohlmeier: Exactly. It was very surprising, and when there are fractures like this without a known cause, especially in a previously healthy active man, we look for silent reasons, possible secondary causes of bone loss. And that's really why endocrine is involved with osteoporosis because there are a lot of hormone-related or calcium- or vitamin D-related reasons that you can't feel that can thin your bones. Probably 60 percent of men and 50 percent of women have a secondary cause of bone loss that might be reversible. So that's what we looked for with David. Andrew Schorr: Now, you found low testosterone. Tell us about that. Dr. Kohlmeier: Yes, without any other suspicion aside from fractures, David’s testosterone levels were low. Low testosterone in men can be either part of andropause, like women go through menopause, not as common and not at as young of an age, or it can be due to the pituitary gland in the brain just not telling the man to make testosterone, and either of those are very treatable. Just like women lose bone without estrogen, men lose bone without testosterone, and they also have more weakness and aching with low testosterone levels. Testosterone treatment remarkably reverses these symptoms. It's good for bone strength and good for muscles. Andrew Schorr: So just a word about secondary causes of bone loss. Let's just list some so people understand what could be secondary causes other than, you know, your bones are thinning as you get older in primarily females. Dr. Kohlmeier: Well, the most common secondary cause are steroids such as: cortisone, kenalog, prednisone, either taken by mouth or injection. High dose topical or inhaled steroids are also detrimental to the skeleton.

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Vitamin D deficiency is also very common. Almost 50 percent of us with thin bones or fractures have a low vitamin D levels. Losing calcium in the urine is another secondary cause of bone loss. Calcium kidney stones is often a sign that someone is leaking calcium and as many as 20 percent of people with low bone density have a high urine calcium excretion, even if they don't make stones. High thyroid levels, a benign parathyroid tumor over secreting parathyroid hormone and multiple myeloma are additional diseases we look for. Despite David being so young, his doctors originally thought he had multiple myeloma, but thankfully he did not. Andrew Schorr: So you've been treating him with various medicines to try and strengthen those bones and avoid fracture. And as we said in our earlier program, and I know you told me you listened to it, fracture is what it's about because, well, for Dave he had tremendous pain and really at the age of 49 could not do so many of the things that he needed to do. And in an older person it could even be fatal. So fractures are not trivial, are they? Dr. Kohlmeier: Absolutely correct. Fractures have been called a ‘Bone Attack’ by one of our colleagues and it is true, they are devastating. Andrew Schorr: Okay. Well, let's bring in our second guest on the medical side, and that's Dr. Doug Bauer. Dr. Bauer is an internal medicine specialist. He's an associate professor of medicine, epidemiology and biostatistics at the UCSF Medical Center in San Francisco. Dr. Bauer, as I'm sure you've seen in your practice too, it is not just women and not just elderly women. Dr. Bauer: No, Andrew, that's absolutely right. What's interesting is that men get osteoporosis. They often just get it at an age of ten or more years older than women. And for many years men were excluded from many of the large studies that allowed us to understand who gets osteoporosis and why. We're just starting now to perform those studies and come to some better understanding of the underlying mechanisms that cause osteoporosis in men. But one thing that's already clear, as Dave is a good example, is that fractures in men or women can be the associated with a significant amount of pain and disability and really can impair their quality of life. Genetics Andrew Schorr: Another question for you, Dr. Bauer. So genetics. So genetics, you know, I mean we pass that on to our children, male, female, color hair, eyes, etc. What about a genetic connection with osteoporosis? And can the genes be passed on to a male in the family just as much as a female?

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Dr. Bauer: Oh, absolutely. There is no question this condition has a very strong genetic component. Unfortunately we have not been able to completely tease out which of the specific genes or groups of genes that cause osteoporosis or at least increase the risk of developing it. We know this from twin studies that twins are much more likely to have similar osteoporosis histories than siblings who aren't twins. But actually this has been known for a number of years because we know that if you have a first degree relative like a parent or a sibling, a brother or sister, that has osteoporosis and particularly if they've had an osteoporotic fracture such as a hip fracture, that actually increases your risk twofold. The trouble is then finding the actual genes and the actual mechanisms so that we could do a test to specifically identify those who are at particularly increased risk, but we know this is clearly a genetic disease with strong genetic components. Andrew Schorr: One last question for you, and that is about scanning, or the DEXA scans or other tests we spoke about a lot in our earlier program. So if I'm a guy where there's been osteoporosis in my family, well, let's just say male or female, shall we bring that up when we meet with a primary care provider like you and then maybe we're a candidate to have a scan? Dr. Bauer: Absolutely. As a matter of fact the existing clinical practice guidelines which help both general physicians as well as specialists guide their practice about who should receive a DEXA scan really include the notion of family history and that if you have a family history, again a first-degree relative with a fracture, that is important information that should be given to your provider so that they can include that in the overall assessment of your risk and whether you should have a DEXA scan or not. Andrew Schorr: So it sounds like the first step in getting help to fight osteoporosis is have a complete disclosure with your doctor about any family history, and it doesn't matter whether you’re male or female. Dr. Bauer: I would argue yes. I would argue that part of the problem is that osteoporosis typically is completely silent until the occurrence of fractures. And Dave for instance may have had his condition for a number of years but since it was silent and he had no other symptoms he didn't know about it. So as a rule most primary care doctors are increasingly sensitized to the issue of osteoporosis, but of course there are many, many diseases and conditions that need to be discussed in that short visit with your doctor, so I think it's particularly important for patients to not forget to inquire about this with their doctor and to make sure that this has been addressed along with other preventative healthcare measures.

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Andrew Schorr: Right. And, Dave, I'm sure when this word, osteoporosis came up associated with you you just felt you didn't fit the profile, right? Dave: Not at all. That's why we were looking at other things. Exercise Andrew Schorr: Yeah, you went so many other places. Okay. Dr. Kohlmeier, so I know one of the areas that you have studied a lot and been on all sorts of national panels relates to exercise. And I recall seeing many news stories saying and showing like women in the gym and they needed to like lift weights and things like that. Is that what it's about? Is it about weight lifting? What can we do related to exercise, because I know you're really into it, to help us have our bones be stronger? Dr. Kohlmeier: Exercise and loading the skeleton is what gives the skeleton a message to become strong and stay strong. So you're absolutely right. For our patients, anything more than what they're already doing is good for their bones. Maybe the reason that David did so well, not fracturing, for so long is because he was very active and his skeleton had that important message day after day. Then when his bone fragility was just too severe, he began to fracture. But all of that exercise and loading he was doing was good and protective for his skeleton. When we say ‘loading’ we mean standing, walking and jumping, an activity that puts forces on the hip that are safe but give the message to bring in bone-forming cells, osteoblasts. And for the spine, it's harder to load the spine safely, but back extension strengthening exercises, not just stretching, but really working the back muscles has been shown to be beneficial for spine strength and flexibility. Andrew Schorr: So I have that image of people though pumping iron in the gym. That's daunting for a lot of people, and if they're had some kind of pain scary even. But so I hear you talking about kind of challenging the body rather than necessarily weighing it down. Dr. Kohlmeier: Exactly. I think that any strengthening with weights is good for balance and overall fitness, but as far as the skeleton goes, the studies that have shown a difference in bone density DEXA measurements with loading , are those focusing on loading of the hip. Gravity is good for the skeleton, but beyond that like walking and jumping.is even better. For a young, strong person without fractures wearing a weight vest while walking and jumping adds still more load to the hip. Dr. Christine Snow was one of the investigators for many years that studied loading with weight

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vests, while others studied the beneficial effects of back exercises. Having a strong abdomen or core results in less back injury allowing for more back extension strengthening. Andrew Schorr: Dr. Bauer, I'm sure you have had patients who say, you know, I really want to lower my risk of osteoporosis but I'm not really a jogger, don't really go to the gym, but I love to swim. So do you say, well, I'm sorry, you've got to get out of the pool. What do you tell them? Dr. Bauer: Well, it's interesting, the studies actually suggest particularly in older individuals, and I would say that's individuals in their 60s and 70s, benefit from lots of different types of exercise and not just weight lifting who are using extra weights. So many of the large studies that have just looked at the relationship between individuals' exercise history and then their likelihood of developing a fracture have found that other types of exercise including swimming actually are protective as well. And this may be because they're also improving their overall neuromuscular function and their reflexes which might be useful, for instance, they fall. So in general walking has also been shown to be a terrific exercise, and you need not be marathoner to actually get benefit from exercise. So both simple walking and even swimming will be helpful. Fall Prevention Andrew Schorr: I want to pick up on a word you just used, "fall." So I know that with severe decrease in bones, I've even heard, probably rare, that there are people with osteoporosis who have turned over the wrong way in bed and had fractures in their ribs, and hopefully that's rare. But, still, falling can happen, and there are hazards that someone can even have in their home. So while you're trying to boost your strength in your bones, what should, particularly an older person, what do you tell them to watch out for in their living situation, Dr. Bauer? Dr. Bauer: Well, this is incredibly important and is really an under recognized area I believe because the vast majority of fractures are associated with some traumatic event. And you're right, there are some individuals who have such severe osteoporosis that they can break a bone with very, very little trauma, but the vast majority are associated with a fall, typically a fall of standing height or less. So it need not be falling off a ladder, falling off cleaning windows. These are often simple falls landing on the hip or on the wrist which result in a fracture. And there's a whole host now of interventions and things that can be done to prevent falls. We've already mentioned one, which is just improving overall physical fitness which improves your reflexes and your reaction time, and even if you do fall your less likely to injure something if you've been exercising.

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There are other simple things that can be done. Removing throw rugs or rugs at the end of hallways where individuals might trip. Being careful about high heels which can increase the risk of falling if you're at all unsteady, use of certain types of medications, particularly long-acting sleeping pills, sleeping medications, increase the risk of fracture, presumably because people have to get up in the middle of the night or do get up in the middle of the night and they're under the influence of this medication and they're more likely to fall. So there are a variety of things that can be done. An important one which I dimension was having cataracts corrected. There is some very provocative evidence that improving your visual acuity can reduce of risk of falling as well. Andrew Schorr: I'll mention a couple more. Dr. Kohlmeier, you may have some too. So I get up in the middle of the night sometimes. I sometimes trip over the dog. So I've got to have the dog sleep in a different place. And also the lighting is poor, and I try to sleep walk not to wake up my wife. But the point is for some people it may make sense to have little grab bars in their bathroom or by the shower where you might otherwise slip, I would think. And also don't string phone wires and extension cords around your house too. Again, these are not trivial because if you fall, break a hip and you're 70 years old, that might be a thing where you might not recover, right, Dr. Kohlmeier? Dr. Kohlmeier: Absolutely. I'd add to that list toys, skate boards, and the many things that get thrown around in everybody's houses. Fall prevention and reducing falls brings up the subject of vitamin D again. I know you discussed this in your first session as well, but it's fascinating how just 700 to 800 units of vitamin D a day has been shown to reduce falls by 22 percent, with an explanation being the beneficial effects of vitamin D on the vitamin D receptor in muscle, which is really exciting. Calcium and Vitamin D Andrew Schorr: All right. Now, maybe if you listened to our first session, and you and I are both in the Pacific Northwest and Dave is too. So over in Spokane you get more sunshine. In Seattle we don't. So we're not getting it from the sun very much, even if, you know we're careful about sunscreen well. So what about taking vitamin D? Should just more of us be taking vitamin D supplements? What do you tell people, Dr. Kohlmeier? Dr. Kohlmeier: Yes, I think the best way to get vitamin D is through supplements, until of course we're told from studies that the vitamin D you make in your skin is better than supplements which has not yet occurred. Not only do we make less vitamin D in our skin as we get older, any sunblock, probably over five, blocks vitamin D production from the UVB sunlight. In addition, the darker your skin is as far as ethnic differences, the less vitamin D made.

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So there's so many reasons, not to mention variations in cloud cover as well as seasonal differences, that leads us to explain vitamin D deficiency. We don’t just see it in high latitude areas now, it really is throughout the country. One explanation might be that you don't go outside when it's 120 degrees out. Everyone really should be thinking about getting at least 800 units of vitamin D a day. And probably children, 600 units. Osteoporotic patients even more than that,2086691252 often 200 units a day or more. Andrew Schorr: Well, let's talk about calcium too. So, for instance, my daughter, who is forming bones, I guess, still. She's 16. She doesn't drink regular milk, she drinks soy milk, which says it's fortified, I believe, with calcium and vitamin D. For kids forming bones is that enough? And what about for those of us who are older or even seniors? Would these products be enough? Dr. Kohlmeier: Yes. I think you can get your calcium through dietary dairy, through foods that are fortified with calcium and vitamin D. I think that it's hard to get enough with just vegetables even though there's always some calcium in vegetables. I also think that the misconception is that people can get enough vitamin D in their diet. Unless it's fortified, many dairy products don't have vitamin D. So where your daughter could get enough calcium in her diet and not have to take a calcium supplement, at some point vitamin D should be taken as a supplement. This would be a good practice to start for everyone. Andrew Schorr: Wow. Dr. Bauer, we think about kids and forming bones, but then we're talking about those of us later in life, whether it's Dave at 49 and I'm 59 or my in-laws who are in their 70s, different stages, we're not forming bone anymore but we want to keep strength and density. So do we get a second chance? We're not going to build more bone, right? Is it just preserving what we have? Is that what it is? Dr. Bauer: That's correct. And actually, you are making bone, Andrew. Your bone is constantly being turned over. So the old bone which may have small little fractures or other imperfections is being removed by cells that have been activated to take out the old bone. And then you have new bone that's being laid down 24 hours a day. So in fact you are remaking your bone each and every day, and for that whole process to be most efficient it requires adequate amounts of calcium and vitamin D regardless of your age. But most of the studies suggest that middle-aged individuals often, if they don't have any dietary issues or for instance are intolerant of milk, many middle-aged individuals get plenty of calcium and vitamin D in their diet. It's actually young girls because they frequently avoid milk, and older individuals who may not absorb the calcium or vitamin D as well that are often deficient.

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Andrew Schorr: Now, if we were children who didn't drink our milk or didn't have a complete diet are we at higher risk then throughout our life, Dr. Bauer? Dr. Bauer: Those are awful difficult questions to answer because we don't really have long studies over decades to know if individuals have dietary insufficiencies as young adults whether they ever catch up. We do know that there's a certain subset of the population that never really achieves what's considered a peak bone mass or an average bone mass as a young adult. And whether that's due to calcium deficiencies, vitamin D problems, lack of exercise, other conditions or eating disorders, those can all be associated with not achieving a normal bone mass as a young individual. The evidence suggests that if you don't reach that genetically predetermined peak early in life then in fact you don't reach it later in life as well. So if you don't, if you will, fill up the tank to begin with it never really allows you to achieve a completely normal bone mass. Andrew Schorr: Dr. Kohlmeier, I have what may seem like a dumb question, but I was wondering about it just sitting here. So we all have different body types, and, as you know, sometimes you look at somebody and say, well, they are big boned. So if somebody, if you look at them and they're sort of stocky or seems to have big bones and someone else doesn't, does that really correlate at all to the strength of their bones or their risk of fracture, just their body type? Dr. Kohlmeier: Yeah, that's not a silly question. I think that if you were to gamble, the bigger somebody is, the stronger their bones. Not only because of greater loading of their skeletons, but also other factors that we'll be learning about more in the future, maybe amount of lean mass. It's not really percent fat but it's more your muscle or lean mass that may impact your bones. On the other hand you can't really tell by looking at somebody. So though somebody who is very tiny with a low body mass index and likely lower levels of lean mass, does have a higher risk of osteoporosis and fracture especially as they get older, there are so many other factors, including genetics, secondary causes of bone loss and medicines that we were talking about, it's just not safe to guess by looking at somebody's body size. Andrew Schorr: And that's where the scans come in and are useful. Dr. Kohlmeier: Yes, the bone density DEXA scans. Even x-rays are not sensitive enough to determine fracture risk. The contrast can change the look of the skeleton on x-rays such that they are not a way to tell bone density or bone quality. Again, the dual x-ray absorptiometer, the DEXA machine, still the Gold Standard. And in the future there'll be other ways at UCSF and other centers Dr. Bauer can tell us about.

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They're using micro MRI and QCT and all sorts of interesting ways to look at bone micro architecture that looks at bone strength and bone quality even better than bone density scans. Andrew Schorr: Sounds like a great place to take a brief break, and when we come back we're going to learn more about how is your specific situation, your osteoporosis risk or even your osteoporosis situation, looked at. What's personalized to you, and we're going to get into what do you do about it. What can you do about it. And then how can a relationship with various organizations support you, and with the right provider, how can they help you. When is medication used and are there any concerns about medications that otherwise could help control osteoporosis. All that as we continue our discussion on osteoporosis. Stay with us. DEXA Scanning Andrew Schorr: Welcome back to our Patient Power program brought to you by the Washington Osteoporosis Coalition, made possible through educational grants from Amgen and Novartis. We're talking with Dr. Doug Bauer from UCSF in San Francisco, and also Dr. Lynn Kohlmeier from the Spokane Osteoporosis Center, of course in Spokane, Washington, and her patient, Dave Peckham, who joins us also from Spokane. So, Dr. Bauer, we're talking about screening now, and in our earlier program and it was mentioned along the way today, DEXA scanning, what is DEXA scanning and who should have it? Dr. Bauer: Well, DEXA scanning is a technology that uses very low doses of radiation, like an x-ray, a chest x-ray or an x-ray of other parts of the body, that assesses the calcium content of the bones. And it's typically done at the hip or at the spine. It can actually be done in other places but really hip or spine are really the most useful to your doctor. And these devices are widely available, particularly in the United States, and they are remarkably good at assessing the amount of calcium in bone which is directly linked to the strength of the bone. DEXA machines have actually been used to come up with specific designations for individuals who have low bone density which is the measurement that's obtained from the test. Individuals that have bone density below a certain level are actually said to have osteoporosis, and individuals whose bone density is low but not as severely depressed as those with osteoporosis have the designation of low bone mass. In the past we called that osteopenia, but we've actually tried to get away from that term now, so that area is designated as low bone mass. And the important point is that this is a remarkably safe, easy-to-do test that takes half an hour or less in your doctor's office or at a local hospital, and it provides a really superb way predict a fracture risk in the future.

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In terms of who should have one of these tests, after a number of years there are now fairly well accepted guidelines for doctors to follow, and the most recent guidelines suggest that all women over age 65 should have a DEXA test and all men over age 70 to 75. There's a little bit of disagreement about the age for men, but certainly women over the age of 65 should have a DEXA test. In addition women who are through the menopause, typically after age 50, if they've had any of a number of risk factors for osteoporosis they should have a DEXA. So, for example, if you smoke cigarettes or if you have a very thin body habitus, in other words if your body mass index that Lynn mentioned earlier is low. If you have had a previous fracture or you have a familiar member who has had a fracture, those all might be indications that your doctor would use to help decide whether you should have a DEXA test before age 65 if you're an older women and below age 70 to 75 if you're a man. Andrew Schorr: One follow-up question. So we mentioned all these things like then taking calcium and vitamin D and maybe even if you're on a medicine. Is there a repeat DEXA scan then at some point to see how things are going and whether they're improving, Dr. Bauer? Dr. Bauer: Well, the vast majority of people who are not taking an osteoporosis medication will have a fairly predictable time course in terms of what happens to their bone density. So the current recommendations are, depending on how good or bad your original bone DEXA is, is that you should have another one anywhere between two to five years, again depending on where you start. The story for repeating a bone DEXA once you've been put on osteoporosis treatments is very, very controversial. And what I like to tell my patients is that it's really an excellent test to determine who should take medications, but it's really not a very good test to determine whether that medication is working or not. I think this was alluded to in the first session. So that's really quite controversial. Most clinicians typically repeat the DEXA after initiating osteoporosis therapy in two to three years, but I know some very good doctors who actually wait five years before repeating the bone DEXA. Andrew Schorr: Dr. Kohlmeier, so this test sounds really useful. Are we at risk of losing it or having it limited at all? Dr. Kohlmeier: We are. The reimbursement for DEXA bone density testing has dropped about 60 percent already since January of 2007, and many offices that have a DEXA that are specialists like we are have stopped doing testing. There are two bills right now, one in the House and one in the Senate, that if they go through, they're part of the Baucus Bill, currently it will reverse the reimbursement back up to 2006 standards, which is about $126. It's not an expensive test. So if that happens I think that all these testing centers will survive and patients won't have to drive three hours to

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get a bone density DEXA test. Now, for our listeners if they want to be an advocate, if you will, through the Osteoporosis Foundation are there any groups where they can kind of sign on and give their view of support? Dr. Kohlmeier: Yes. The ISCD also, so it's just capital ISCD.org, has letters that are already preformatted for you, and you can put in your state and they will direct to the proper legislators. And it really makes a difference. This is a really important time, the end of this year, to see if osteoporosis diagnosis is going to remain available to the men and women who need it. Andrew Schorr: Dr. Kohlmeier, so what if the DEXA scan shows there is osteoporosis or at least low bone density? What do you do then? Medical Therapy Dr. Kohlmeier: That's the point where we ask the patient whether they have other risk factors and if they've actually fractured because the bone density is an important piece but what we really want to know is the person's risk of fracture. So if they've already fractured, especially if they're over the age of 50, then that might be a marker or a sign that their bones aren't as strong, and so we're really going to have them do some blood and urine tests and talk about medical therapy. Andrew Schorr: Medical therapy. Dr. Bauer, what does that mean? Dr. Bauer: Well, medical therapy generally means that after you've tried to address lifestyle issues and make sure that there aren't any reversible risk fractures such as smoking, making sure our patients aren't abusing alcohol, that they're getting adequate amounts of calcium and vitamin D, medical therapy typically means medications that are prescribed by a physician and taken either by mouth or intravenously or as injections. These medications can be taken on a daily basis, a weekly basis, a monthly basis, or even on a yearly basis now. Andrew Schorr: All right. Do we have a lot to choose from? Dr. Bauer: We have a very wide and growing selection of potential medications to use. Depending on what type of osteoporosis you have as well as any other associated medical conditions that you might have, your doctor might offer you what's called a bisphosphonate. This is one of the most common types of medications. These are the medications that are typically taken by mouth or can be given intravenously on

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a yearly basis. And these are the medications that you've probably heard ads for such as Boniva, Fosamax, which is alendronate, and Actonel, which is also known as risedronate. Andrew Schorr: Dr. Kohlmeier, so we have lots of medicines. How do you decide which one for which person? And are there side effects people need to be aware of? Dr. Kohlmeier: That is an important question. There are risks to all medicines. I think that when we're talking to our patients we focus on their fracture risk, and of course we would agree with them because most people don't want to take a medicine unless they have to that the benefits of the medicine outweigh the risks of the medicine. So we want a medication that reduces hip fracture in somebody who is at high risk for hip fracture, and so we look at the studies and often the FDA approvals for the different medications and talk with the patient. And often they help us decide between which of these medicines they would prefer. Andrew Schorr: All right. And are there some specific side effects you'd call out that typically go with these medicines? Dr. Kohlmeier: Yeah, I think that the one that is most well known is the GI side effects or indigestion or anything that kind of feels like increased reflux or other abdominal symptoms. And many people can't tolerate the bisphosphonates, as Dr. Bauer was saying. Often people can tolerate one and not the other, so they would stop for a few weeks if their symptoms were mild and went away and try one of the others. Proper dosing is very important since the oral bisphosphonates, Fosamax, Actonel and Boniva, are very poorly absorbed, only about .6 percent, so we talk with people how important it is to take it correctly. And then we talk about the hormone treatments well. So we have calcitonin or miacalcin. We have Evista, a kind of a designer estrogen, a SERM, raloxifene. And then we have teriparatide or parathyroid hormone, Forteo, as well. Andrew Schorr: Dr. Kohlmeier, how do we know if the medicine someone is taking a working? Dr. Kohlmeier: Well, that's an excellent and difficult question to answer. I think most of our confidence in these medications comes from studies that were over many years where thousands of men and women, but mostly women, were followed, and those on medical therapy showed a fracture reduction anywhere from 50 to 70 percent, depending on the site, hip or spine, and depending on the medication. But in our individual patient it's harder to know if a medication is working. A bone density test helps, and if you have a baseline measurement, and are comparing on the same

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bone density machine, let's say two years later, a gain of 4 percent versus a loss of 8 percent would give you good information to make clinical decisions and possibly change or start medications. I think the difficult aspect is even if somebody loses bone density or fractures it's not necessarily a treatment failure. And that's important to talk about because often patients stop their medication when they're doing everything right because they think or are told, it's not working. They could have lost more bone or even fractured more if not on the medication. And of course there is a lot more to treatment than the medication itself, treating secondary causes of bone loss if present, calcium and vitamin D intake, exercise and fall prevention, all of which we are discussing here. Andrew Schorr: Dr. Bauer, what do you tell people, because they come in, they're taking medicines and they say, Am I getting better? Dr. Bauer: Well, Lynn is absolutely right. There are very large, well-done studies that show that the vast majority of individuals who take these medications derive benefit, and I think that's the important lesson and message that patients should hear. When they are taking these medications compared to taking a sugar pill, a placebo, they work very, very well. In fact what most of the recent literature suggests is that a far greater problem is not that the medications aren't working but that the patients aren't taking them. And there's a variety of studies showing that in many different practice settings upwards of even 50 percent of individuals will stop taking their medications or not take them on a regular basis after one year. And of course this is a very big problem because these medications can't be expected to work if patients aren't taking them as they're prescribed. This is true, by the way, for all medications that are for conditions where you're trying to prevent something in the future, high blood pressure medications and cholesterol medications, for instance, where patients don't really feel any better or any worse if they're taking the medication or not, and they really have to have confidence that their doctor is prescribing the right medication and that they are deriving benefit from it. Bisphosphonates & Necrosis of the Jaw Andrew Schorr: Now, there's one situation that's come up where some people who were taking the medicines stopped or do stop, and that is when they're going to have dental work. And there's been this concern in dentistry and in oncology as well related to people taking at least one group of medicines, the bisphosphonates, and if they have

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dental work they could have basically I think you call it necrosis of the jaw and it just won't heal. Dr. Bauer, talk about that for a minute. Is that a big, prevalent problem? Should, in your view, stop taking their osteoporosis medicine? Dr. Bauer: Well, fortunately this is not a common side effect, but when it happens it's really terrible. The good news is that the vast majority of individuals who have developed this unfortunate complication, which is called osteonecrosis of the jaw, which is really a condition where patients develop exposed bone in their jaw. So the gum actually breaks down and there's actually exposed bone. This has now been reported in a number of patients. All the evidence suggests that this is an extremely unusual side effect or complication of taking bisphosphonates, and the vast majority of them, over 95 percent of the individuals that have developed this unfortunate side effect, have been taking very high doses of bisphosphonates not for osteoporosis but because they have some sort of malignancy, and typically and it's a malignancy that might cause fractures. So this is a very important thing to know about, but fortunately it's extremely rare. In the 30- or 40,000 patients that have been studied in large clinical trials for patients with osteoporosis there wasn't a single reported case of this osteonecrosis of the jaw. But of course there are millions and millions of individuals taking these medications now, so this is something that clinicians and patients need to be aware of, if they develop a painful sore in the mouth, that they need to notify their dentist and their doctor right away. What to do about this has also been problematic. This is a condition where there's no good treatments. There's no specific medication or surgical procedure for these unfortunate problems with the jaw. Our best evidence now is that we should stop the bisphosphonate and the patient should be followed by a good oral surgeon who is familiar with this type of problem. The more troublesome issue is what to do about patients that need to have dental work or a tooth extracted while they're taking this medication because many of these episodes of osteonecrosis of the jaw have been apparently precipitated by dental work. There are some experts, particularly dental experts that feel that it might be a good idea to stop bisphosphonates for a number of weeks or months prior to having any dental work. The medical community is a little bit less certain about the wisdom of this because we know that these medications, the bisphosphonates, are retained in your bone for many, many years if not decades, so simply stopping them for a short period of time before you have dental work may not be particularly useful. But it is something you should probably discuss with both your dentist and the doctor that gave you the prescription for the bisphosphonate.

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Andrew Schorr: So, Dr. Kohlmeier, it seems like for the vast majority of people though, if you need medicine is keep taking it, have an active dialogue, and maybe the best thing that they can do is seek out a provider, such as yourself, such as Dr. Bauer, where they can have an ongoing relationship for the management of this condition. Dr. Kohlmeier: Yes. And I think another one other important point that has to do with how long do you take a medication and do I want to take a medication that stays in my bone for decades comes up every day, several times a day. And a few other comments about the osteonecrosis of the jaw that I like to tell my patients is there is a big difference between, one of our dentists called it chemotherapeutic bisphosphonate doses, three to 20 the dose intravenously every month for cancer patients versus the osteoporosis doses. So that's the first difference, I think. And where that applies is when my patients say, I've heard if you take this medicine for so many years then this and this happens, in the cancer patients there was a dose response, meaning the longer patients were on this chemotherapeutic bisphosphonate doses for cancer the closer they became to having a .6 to 2 percent risk, something that's really tangible, of ONJ, but that doesn't apply to people on long-dose osteoporosis bisphosphonates. And I think that difference even in the medical and dental community needs to be looked at. Now, there are very smart and brilliant investigators that are looking into this and that are concerned, and we're thankful for that because, as Dr. Bauer said, there are millions of people who are being treated with bisphosphonates. The one other message to my patients is that, I'd love Dr. Bauer's opinion, that the marker of bone turnover, which we haven't even talked about because it really isn't a common test for our osteoporotic patients though it is for studies, does not help in any way predict the risk of osteonecrosis of the jaw. So when patients say my dentist ordered a CTX or an NTX, I really think that that has not been shown to have any indicator of ONJ. Would you agree, Dr. Bauer? Dr. Bauer: I would absolutely agree with you. Everything you said. Andrew Schorr: Okay. We're going to move on. I've got some questions from our audience. So Mary from Wenatchee, Washington, I think we've covered this but I just want to give her a good answer. She said, "My great grandmother and my grandmother both had osteoporosis. I know that there's not much I can do completely to prevent osteoporosis, but will exercise lower my risk of fracture?" It sounds like, Dr. Kohlmeier, it's yes, it's to the good. Dr. Kohlmeier: Doing all of the things that we have been talking about as soon as you start focusing on your skeleton, knowing your family history is fantastic and also to

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reflect that on her children and her relatives. One study that Christine Snow and her colleagues did is they took children in elementary school and several hundred of them went through jumping exercises and the other group stretched, and they did this for months, and those children had a different peak bone density depending on the load of their skeleton. So any bit that we can do improves our bone density. Listener Questions Andrew Schorr: Here's another question we got from Virginia in Seattle. Let me pitch this one to you, Dr. Bauer. "What specific exercises can be done to help with low bone density in the femoral hip bone and the lower spine?" Is there anything you'd recommend for that? Dr. Bauer: As we mentioned earlier, I would argue that any exercise is better than no exercise. Walking, weight-bearing exercise may provide some additional benefit, but really any sort of general conditioning exercise and particularly walking would be most appropriate for Virginia. Andrew Schorr: Virginia had another question, Dr. Kohlmeier. She asks, "How much calcium per day is advised per day for women over the age of 60?" She wondered, "Is it 1200 milligrams or more?" Dr. Kohlmeier: Yes, 1200 milligrams and not more. Really I think when the Women's Health Initiative showed that there was a 17 percent increase relative risk of kidney stones in the women that took their calcium, we don't want people just taking three times more calcium than they're already taking. I think for her the importance of splitting it up, at least twice a day, so that you're absorbing it. And to have a good vitamin D level because if her vitamin D level is low she'll probably absorb less than 10 percent of the calcium she's taking. And with all the efforts to take your calcium you want to absorb as much as you can. Andrew Schorr: Here's a question from Carrie in Portland, Dr. Bauer. Her son has a rare condition, PKU, as you know, a metabolic condition, lifelong, and that child is on a strict diet of very low protein foods. And in that PKU community there's a concern about bone density. In a situation like that might a child need a bone density test? Dr. Bauer: I'd have to defer to the pediatricians because I'm not really an expert in this area, but I know that this is an area that is increasingly recognized, and looking at skeletal complications of inherited and other conditions is something that people are quite interested in. And I know that there are excellent specialists that would know the specific answer to the question about PKU.

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Andrew Schorr: Dr. Kohlmeier, any comments about kids? Dr. Kohlmeier: Yes. I think that we have children that not only have rare conditions, like PKU that Dr. Bauer was speaking about, or osteogenesis imperfecta, but also children that have conditions where they need steroids, and we can measure bone density using normative data that goes down to just several months old. But it really is the pediatric endocrinologists and not the general doctors or the adult endocrinologists that take that information and decide what to do because we don't have treatments FDA approved for children. Laura Bachrach at Stanford has really been a pioneer in this field, and I think it's important to think of our children and know that they're forming their peak bone density up until the 20s and 30s but putting down most of their calcium between 10 and 12 years old. Andrew Schorr: Dr. Kohlmeier, as we heard with Dave, and I'm going to give Dave a chance to talk to the audience as well again about advice he'd have for them, but it sounds like you want to assess your personal situation, have the proper screening, and then be in a relationship with someone like yourself, a knowledgeable provider, on a treatment plan if you need treatment, or an exercise plan or diet plan, that's really personalized to you because people are different, right? Dr. Kohlmeier: Yes. I think it's the whole package, as you're describing. The diagnosis is key and when you have a family history or you've fractured you think, could this affect me. So that's when the bone density test comes in because x-rays aren't as helpful. In the prior program I think you talked about screening where you get a heel or a finger screening test rather than a hip and spine. And then you go on to working through blood and urine tests and making sure you're not missing a silent secondary cause that when you can do something about it, like if you can prevent calcium excretion in the urine, if you can normalize that or normalize thyroid or vitamin D, then you're giving the bone its best chance to respond to the calcium, vitamin D intake, to exercise, and then the last and maybe the most important fracture-reducing step is medical therapy. Closing Comments Andrew Schorr: All right. One last question to you, Dr. Kohlmeier. So we've talked and tried to stress for the audience that osteoporosis and the risk of fracture and the devastating effects of fracture should not be ignored. What do you want to say to the audience listening? Dr. Kohlmeier: I think one of the take-home messages is that when you fracture it's serious, and it's a bone attack, as many of our colleagues have used the term. And that's a

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point where it's not too late and we need to go back and start from the beginning and think about how we can improve bone density, bone strength and reduce fractures. On the other side of the spectrum is prevention and to think about it in our children as our adolescents are exercising and hopefully not drinking soda instead of orange juice fortified with calcium and vitamin D. So it's a whole spectrum of prevention and treatment. Andrew Schorr: I know you have a wonderful event in Spokane related to osteoporosis. What's that? Dr. Kohlmeier: We do. It's the Wonder Woman Triathlon for osteoporosis awareness, and there are many other athletic events for all sorts of other important conditions. And the National Osteoporosis Foundation and others have had walks for osteoporosis, but this is the only triathlon to my knowledge in country for osteoporosis. And this year was our third year. And I think programs like this one that we're doing here and athletic events really help increase awareness not only in our community but throughout the country. We have about 700 women participating, about 4,000 spectators and this year we had 20 teams where one woman would do one part of the triathlon and each of those osteoporosis teams had one woman with osteoporosis, and she did the three mile walk around the lake. I think for the community awareness piece we had hundreds of people screened, and as we started at the beginning of the program talking about men and how they're not screened enough, we made every effort we could to get every man that was at the park watching their women racers come and get a heel ultrasound bone density test. Andrew Schorr: Well, congratulations on that event, and thank you so much for helping people who are afflicted by this. And one of them again is with us, Dave Peckham. So, Dave, you're doing better, but it took you a while to get to the right person to help. What would you say to listeners who are maybe worried about this for themselves or their family? Dave: Well, obviously I was an unusual case, but if you've got a fracture that's not healing in six weeks and then you have more than one fracture then you've got to be suspicious that it's osteoporosis. Andrew Schorr: And you have to keep pushing to get an answer and get help from someone who is knowledgeable.

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Dave: Yeah, and for a primary care physician it's often out of their realm, so you have to find a specialist who will be familiar with what you're going through. Andrew Schorr: Often true, although in fairness to Dr. Bauer he is a primary care doctor. Dr. Bauer, so from your point of view, not every primary care doctor is up on this and they have got to worry about cholesterol and blood pressure and diabetes and so many things. And as we said in our last program, what would you say to our listening audience so this is put on the take as well, the family history is discussed and their osteoporosis risk or having it is properly assessed and dealt with? Dr. Bauer: Absolutely. I would just argue that primary care doctors, like all doctors and patients are busy, and it may require the patient being motivated to make sure that this does fall off the list of important things that are discussed in that visit. And I've even had patients that have reminded me despite the fact that I think about this every single day that I haven't really talked to them about their osteoporosis risk, and I was very happy when they reminded me. And it really is something that I would encourage patients to do because it's in their best interest and we're all trying to reduce the burden of osteoporosis, but that can only be done when we appropriately identify patients and evaluate them and talk about preventative measures. Andrew Schorr: I want to thank our guests for being with us and really helping us better understand this in our second program in this series. We're going to do a third program coming up that's going to discuss specifically treatments and research and help you understand the range and what the future research is going, future trends in osteoporosis. But I think for so many people we want to limit your risk. We want to help our children have strong bones, and we want to help all of us, as Dr. Bauer's explaining, as we're building new bone cells all the time, be as strong as we can to avoid fracture, if we've had a fracture, certainly avoid them in the future. Dave, we want to wish you all the best in recovering from osteoporosis and out of the recliner and hopefully you'll be swimming. And you're starting to exercise again, now, right? Dave: Yes, that is correct. Andrew Schorr: Okay. All the best to you. And your doctor, Dr. Lynn Kohlmeier from Spokane Osteoporosis Center, thank you for all you do, Doctor, and we appreciate you being with us. Dr. Kohlmeier: Thank you.

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Andrew Schorr: And Dr. Doug Bauer from UCSF, thank you for helping us have greater understanding of osteoporosis. Thanks for being with us. Dr. Bauer: My pleasure. Andrew Schorr: Well, this is what we do on Patient Power. Special thanks to our colleague in all this, Washington Osteoporosis Coalition, for helping people not just in Washington state but across the US and around the world. And we also thank funding educational grants from Amgen and Novartis. I'm Andrew Schorr. Remember, knowledge can be the best medicine of all.

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

Getting Help to Fight Osteoporosis December 1, 2009 …cdn.patientpower.info/p2docs/transcripts/WOC120109.pdf · Getting Help to Fight Osteoporosis Webcast December 1, 2009 Lynn Kohlmeier,