♪♪>>Behind every heartbeat is a story we can learn from. ♪♪ As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. “Second Opinion” is funded by Blue Cross Blue Shield.>>”Second Opinion” is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York. ♪♪ [ Applause ]>>Welcome to “Second Opinion,” where, each week, a panel of medical experts comes together to discuss a real-life cases. I’m your host, Dr. Peter Salgo. I want to thank everybody for being here — our folks on our panel, you in the live studio audience. Our experts today are Dr. Emmanuel Quaidoo, from Allergy, Asthma, Immunology of Rochester, primary-care physician, from the University of Rochester Medical Center Dr. Lou Papa. And special guest, Matt Iseman, the host of “American Ninja Warrior,” one of my young boy’s favorite shows. Thank you so much for being here. So, Matt, I understand that you were working out, and then you had some health issues.>>Yes.>>We have a primary-care physician right here.>>Perfect.>>You and Lou need to have a talk.>>No good deed goes unpunished, right?>>Shouldn’t have worked out. That’s the lesson.>>So, let’s go back. What happened exactly that let you know that that’s when this all started?>>So, it was summer of 2001. I was living Venice Beach and I was working out at Gold’s Gym, the Mecca of bodybuilding. And I was working out pretty intensely. And I started having pain in my right index finger. And it just — It felt like a dull ache, but it just felt like I’d done something wrong, and I knew it was more. I played sports my whole life, kind of knew bumps and bruises, and this felt a little different. It felt like something was going on that I needed to pay attention to. And in my mind, I’m a pretty good analyst. I was doing the elliptical. The elliptical was relatively new. And I’d been hitting the the elliptical really hard.>>Really hard.>>And I thought — I thought, “You know what? I’m probably over-gripping. I probably irritated my finger.”>>Right.>>And so I thought, “I need to rest it.” And that was the first time I realized something was starting to change.>>Okay. And then, did that get better?>>So, it didn’t get worse.>>Ah!>>But what I noticed is — So, I laid off it and I thought, “I still need to get my cardio.” So what I started to do was jogging. Now, the finger pain didn’t go away, so I couldn’t go back to the elliptical, but I thought, “I’ll start jogging for my cardio.” So, I was on the boardwalk, which is gorgeous in Venice. And I started logging quite a few miles…>>Right.>>…probably 3 or 4 times a week. But then I started getting pain in my feet, right on the balls of the feet. And it just — It felt kind of like I’d bruised it.>>Mm-hmm.>>And, once again, I thought, “Alright, I’ve really stepped up my running routine. I’m not a small guy.” I thought, “My feet are responding here. They’re letting me know I’m logging too many miles.” So, at that point, I thought, “Well, I’ll lay off the elliptical and I’ll stop jogging.” But, at that point, I was — So, I should say I was a doctor in kind of a previous lifetime. I’d gone to medical school, had my M.D. And, so, at this point, it raised enough red flags that I thought, “Maybe I should just go get checked out and see if there’s something going on.”>>Absolutely.>>So I went in to a doctor, and she did tests, did an x-ray, and said, “Everything’s fine. Everything looks good.” Her only suggestion was to go to a podiatrist to see if there was anything going on with the feet. And the podiatrist got me orthotics, but as he took a look, he’s like, “You know, you’re a bigger guy. It could be a problem with foot support.” So his solution was clogs.>>Ah!>>So I’m –>>That probably goes really well with the Ninja thing.>>Well, so, yeah, at this point, I think I’m, you know, 30, 31 years old. I’m living in Hollywood. I’m single. And if you want to impress the ladies, wear clogs. [ Laughter ]>>Did you ever notice, in any time, in your hands or your feet, that it was visibly swollen or visibly –>>Never had anything — No. And, obviously, it was, you know, checking the finger and thought, you know, “Could I have had a bite?” Anything. I was looking for anything on the surface and didn’t notice anything, didn’t notice any swelling, which, again, made me think, “Alright, this is probably just kind of something with the tendons, kind of a bruise.”>>What about in the morning? What did it feel like in the morning?>>In the morning — So, what I started to notice then, as the weeks and months went on, I started to have a little more stiffness — not really in the knees or the shoulders or anything, but it was the back.>>Right.>>The back and neck really started to get stiff.>>When you say “back,” where? Like, the upper back?>>Upper back. So, really, the whole — Along the spinal column, I just noticed the muscles feeling really tight — and my neck. And my neck started to really stiffen up, and it got to the point where — Obviously, you do a lot of driving in L.A., and I wasn’t able to — And I’m still not really able to, but turn around and look. And so I apologize if anyone drove in L.A. near me. I just would put the turn indicator on, kind of count to 3, and go, “Alright, here we go.” [ Laughter ] And I was going in to see — I continued to see the doctor, the primary-care doctor, because something didn’t feel right.>>Right.>>And she kept running tests, and all the tests — And she started to expand her spectrum of tests, and everything was coming back normal. And I remember that’s what she would say is, “Everything’s normal.”>>Right.>>But I just knew I didn’t feel normal. And so I kept expanding my search in terms of therapeutic treatments, and so I was trying things like acupuncture, chiropractic. I tried aromatherapy. I was trying anything –>>Everything.>>Yeah.>>Anything and everything. And clogs.>>And clogs. [ Laughter ]>>Lou, what’s going through your mind as you talk to him right now?>>So, the degree of his symptoms, and specifically, when I asked about the stiffness in the morning, that was something that really helped me out. It’s been going on for several weeks, several months, involving a lot of small joints — his hands and his feet. And now he’s talking about his neck, as well. You worry about an inflammatory condition — inflammatory arthropathy. So, people like to think of that in, like, “autoimmune disease.” And there’s a bunch of them. So, you know, there’s rheumatoid arthritis, which is kind of the big one. There’s lupus. There’s other autoimmune conditions that affect it, as well, that — I would get additional symptoms from him, like, you know, has he noticed any chest pain or abdominal pain or eye symptoms or mouth symptoms? You know, people seem to think, with these autoimmune diseases, it’s just a matter of a blood test. This is the classic detective-medicine stuff that’s really important to kind of follow people through this, because it may not be obvious at first.>>How did you finally get to the diagnosis?>>So, this goes on, and during this time — So, I stopped working out for the first — I’d been an athlete my whole life. I’ve played sports, was active. Stopped working out entirely. I was sleeping. Fatigue had set in. I was sleeping 10 to 12 hours a day and needing naps. I gained 55 pounds. I really felt like a shell of myself. And it was Christmas of 2002. I’m home with my dad, who’s a world-renowned physician, who’s actually been on this show.>>That’s right.>>And my dad was watching me walk, and he noticed how stiff I was and he thought, “This is gonna screw up skiing this year.” So he said, “We got to get you an injection in your feet to lessen the pain.” Took me to his friend, who’s an orthopod, to give me a cortisone injection to try to just see if that would help. And the doctor says, “I got to take an X-ray of your feet before I put a needle in there.” Now, I’d had X-rays within six months that were normal. And I told him, I’m like, “It’s not the X-ray. It’s fine.” He goes, “I’m not putting the needle in without checking it.” So he comes back a few minutes later, puts the X-ray up, and he says, “How long have you had rheumatoid arthritis?” And I said, “About five seconds. What are you talking about?” He looked at the X-ray, and he goes, “You have erosive changes. This is textbook RA.” I go, “I’ve been tested.” Because I knew that my doctor had said, “We got to rule out anything rheumatalogic and inflammatory diseases.” They tested for it just a few months before, and it was negative. And I told him that, and he said, “Well, get tested tomorrow.” And I did. It was grossly positive.>>So, how do you explain all of that? He’s been tested for months and months, and then suddenly — bang — positive.>>Well, yeah, we don’t have details on which specific tests were done, but, classically, rheumatoid arthritis is associated with the presence of a positive rheumatoid factor.>>That’s a blood test.>>That’s correct.>>Okay.>>And then one also finds a positive anti-CCP antibody.>>Another blood test.>>That is another blood test.>>Okay.>>But even before that, the key features are really more of a symmetric polyarthritis. So you clearly had symptoms in both feet.>>Mm-hmm.>>You had prolonged morning stiffness, which is classic for an inflammatory arthritis. And then, as well, you had other systemic features — you talk about fatigue. Sometimes patients can even have a low-grade fever. And so you really had a lot of manifestations of a chronic, systemic, inflammatory process.>>So, we’ve been throwing this term around a little bit, rheumatoid arthritis, which is what they diagnosed you with. Define that for me. What is it?>>Yeah. So, rheumatoid arthritis is a systemic, inflammatory disease which classically presents with a symmetric polyarthritis.>>And you make the diagnosis with blood tests?>>Well, the history, the physical exam, the blood tests, besides the two markers — the positive rheumatoid factor and the positive anti-CCP. Classically, most patients have an elevated sed rate or CRP.>>Another blood test.>>Which are markers of inflammation.>>Now, there’s other kinds of arthritis, right? Osteoarthritis has been described as the arthritis of wear and tear, the joint is wearing out, but rheumatoid is the joint is under attack.>>That’s correct.>>Alright, so that’s terrible, and that’s why it’s symmetric, because your body is attacking your joints, yeah?>>It’s systemic.>>And it’s destructive.>>Oh, it’s destructive. It is destroying your life.>>Yeah. Well, that was the hardest part, is feeling — It was such an insidious onset, and, for me, I didn’t realize how sick I was until I started getting treated, and I’d become a shell of myself physically and emotionally. The toll it took on me emotionally was something that you don’t often talk about.>>Did it make you feel better to have a diagnosis, to know that, “I know what this is”?>>So that was the strangest thing. You’re being told you have a chronic autoimmune disease and that there’s no cure. And when you hear that, on the surface, people think that had to be devastating, and it was the contrary, that because for 18 months I’d been falling apart and being told, “There’s nothing wrong with you,” despite feeling I’m not myself. Everything was telling me something is wrong with me, and being told that, “We can’t find anything,” to finally have an answer was a relief. And it just felt like, “Alright, I’m not crazy.” And now, even though this isn’t the most promising diagnosis you might want, it’s the idea of, “At least I know what I’m facing.”>>Alright, well, we’re gonna pause here just for a moment. You know, every day, we hear about medical innovations that make an impact and hold promise for improving our healthcare. Take a look at this one. ♪♪>>There was always been a big divide between what we do to train surgeons or to practice and what we do in real life. It is like preparing you to swing a golf club without a ball, and it would be excellent or a true innovation if we could find a way in which the surgeon can actually predict the outcomes even before the patient steps into the operating room. ♪♪ We start out by taking the patient’s scan. That becomes then a 3-D virtual model. But a 3-D virtual model is typically what you would look at and be able to plan with, but you cannot do an immersive practice event on it or a rehearsal. What we’ve done is we’ve tried to combine the geometry of trying to get the details from the patient’s CT scans. At the same time, we’ve used polymer technology. And we use a hydrogel. A hydrogel is a water-based gel that can really replicate the mechanical properties of human tissue during cutting or dissection or suturing. So, this is a model of a patient’s kidney, and it’s an exact replica of the patient’s kidney with the tumor and the vessels. This looks, feels — the physical properties of this model are equal to the physical properties of his kidney, and this is the tumor right here. If we cut through this, this will actually bleed, and this is a result of these hollowed-out vessels that are right here, that we connect to a pump during the rehearsal. We would take this model, put it in the body cast of the patient, surround it with all the other organs, again replicated from the patient’s CT scan. So when we tried our first patient, it was actually one of the most difficult cases because it was a patient that, if we had removed the entire kidney, he would’ve ended up on dialysis. After I did the rehearsal, I actually did it more than once. We ended up doing it three times. And then, when I went to the operating room and was able to do this patient’s surgery, it was like déjà vu. What I was able to do was identify where it was gonna bleed more and, for example, put a clip on it before I cut it, so the blood loss went from 100 — which is not a lot — to zero. Now, do that a couple of times, and we saved a liter of the patient’s blood, and that’s exactly what happened. I came back really energized to do this in more patients, and we started doing it in even some of the most difficult patients. Some of them even had six tumors in their kidney. When we found the success in kidney-cancer surgery, we actually started to replicate this into liver surgery, heart surgery, even prostate-cancer surgery. We’re already seeing differences in hospital stay, amount of blood loss, when the patients are discharged, the complications that the patients have to endure, and also readmission rates, which right now are one of the biggest reasons for healthcare costs going up. So we’re not only impacting direct patient outcomes, but we are impacting the healthcare overall. ♪♪>>And we’re back. We’ve already established now, because you got the diagnosis, that you have rheumatoid arthritis.>>Yes.>>A nasty disease. There is no cure, but there are treatments, so what did you get right off the bat to treat you?>>So, I was pretty lucky in that I actually went to my dad’s hospital, National Jewish, to get diagnosed by one of his long-time colleagues, and because he saw the X-ray changes, he’s like, “This is clearly aggressive,” especially given that my X-rays had been normal just a few months before. Usually, you have to ramp up your treatments, but he said, “Listen, you’re a young guy. I know you want to be active, and we don’t want to allow any further damage.” So he started me on a biologic right away, REMICADE, along with methotrexate.>>I want to back up a little bit because REMICADE is great stuff, and it’s really high-tech and brand new.>>Yes.>>And what I like about what your doctor told you is that, “We want to prevent further damage.” He wasn’t treating your symptoms, but treating the disease, what’s actually chewing away at your joint.>>Well, I thought that was one of the important things, was you can’t get it back, and the longer you wait, the more damage could be done, and, for me, the damage had already been done.>>Sooner better than later.>>The new approach is totally different, okay? We recommend now aggressive treatment early on. For patients who have not had erosions yet, you want to prevent erosions from developing. And for most patients, the initial treatment advice would be methotrexate.>>Now, that’s an anti-cancer drug, methotrexate. That’s what it was designed to do. He doesn’t have cancer. He’s got rheumatoid arthritis.>>That’s correct, and I stress to patients that we’re not treating you for cancer, okay? So the doses that we prescribe are much smaller than if we were treating you for cancer. So, besides its effect on killing cancer cells, methotrexate also has anti-inflammatory properties, and it really slows down the disease process in rheumatoid arthritis.>>And in the meantime, what do you do about all the pain? Lou, you see patients with this.>>Yeah, so lots of times, what happens, if I have a high index of suspicion, I’ll try to get them in with Manny as soon as I can. [ Laughter ] And that’s important because nowadays — The old teaching was, you know, rheumatoid factor — we didn’t have CCP back then — plain films. If you’re getting films to make the diagnosis, you’ve waited too long, right, because the damage is done. So there has to be a high index of suspicion, so sometimes what I’ll do, if I need to get them in to see Manny soon, they’ll do the nonsteroidals, unless they have other conditions, because the problem with the nonsteroidals is, if you have heart disease, they’re a problem to use, if you have kidney disease, they’re a problem to use, if you have ulcer disease, they’re a problem to use, and if you’re over 75, they’re a problem to use so…>>Other than that, they’re great.>>So, very often, the thing that works best to get them under control is I’ll use steroids.>>Steroids, another problematic drug, right? They’re immunosuppressant. You can get infections. You gain weight.>>Right, but it’s a bridge.>>It’s a bridge to Manny.>>Right. So it’s a bridge to Manny. It’s like, “Look, I’m worried that you have an inflammatory condition. I don’t care that your X-rays are normal, I don’t care that your blood work’s normal. You may even have seronegative rheumatoid arthritis.” I said, “We’re gonna get you started on steroids so you feel better, but that’s a bridge. I got to get you to Manny to think about other treatment.”>>Well, what happens if he doesn’t treat it?>>Well, unfortunately, this is a chronic condition which is only going to get worse if untreated. So, before the advent of the biologics, more often than not, patients ended up disabled as a result of progressive joint destruction and deformities.>>Now, you’ve mentioned biologics several times. What are biologics?>>Yeah. So, biologics are pharmaceuticals which, by and large, are protein materials. They’re derived from living organisms or from a part of a living organism through a recombinant DNA technique. Okay, so they’re designed to target specific molecules that are known to be important in the disease pathogenesis of rheumatoid arthritis.>>Have they made a difference?>>Absolutely.>>How so?>>Well, they made a huge difference, okay? So back when I was in training, a little over 20 years ago… [ Chuckles ]>>He’s a young man.>>[ Laughs ] …it was not uncommon to see patients come in with deformities, in wheelchairs, and so on. Now one rarely sees those patients.>>Well, you’ve seen the impact of these drugs from the inside looking out.>>Yeah.>>What happened when you started taking them?>>It was like a veil was lifted. I think it was about three weeks, maybe, when I just — I didn’t realize how sick I’d become until I started to get well, and I felt my energy coming back and just this — it was just, again, the veil, that it was lifted, and I hadn’t realized, I think, how far I’d fallen, because it kind of happened gradually. I was rationalizing it. But it was like I got my energy back. I felt like myself again. Unfortunately, there was damage to my feet, but, otherwise, a lot of that stiffness resolved. There’s still some residual damage there, but it was just getting my life back. It was getting that switch turned back on. It was amazing and particularly because — again, being a little bit of a doctor, as soon as I’m diagnosed, you start going to the textbooks, and what do you see in the textbooks? Textbook cases, which tend to be the worst cases. So you see the joint deformities, you see these malformed hands, you see people crippled over in wheelchairs, and you think, “Is this gonna be me?” And when I started to get well, you finally get the sense of maybe there’s a different path. And that’s one of the reasons why I wanted to be so open about telling my story, because when you look at me, I don’t think people would know I’m sick, and you want people to have a different example of what the future of a disease might be rather than feeling like this horrible outcome is the only future.>>Well, the thing is, also, about rheumatoid, it’s a systemic disease. When you say autoimmune, it’s not just the joints, right? What other organs is it affecting?>>Well, it can affect the skin. In other autoimmune diseases, it can affect the lining of your lungs and your stomach, your mouth, your eyes. It can affect the brain, the kidneys. So autoimmune diseases have a number of different effects, but one of the things that we didn’t talk about is, with any of the autoimmune disease, they’re pro-inflammatory, so there’s a higher risk of vascular disease. To be clear, inflammation’s a good thing in some situations, right? If you get an infection, you need to heal from something, it’s an important thing, but there’s times that it gets out of control, and we know inflammation increases risk for heart disease, and we see it in patients that have inflammatory conditions. They have a higher risk of heart disease, and the hope is that, with these drugs, you tamp down that inflammation. You also not only improve your joints — you reduce your risk for vascular disease.>>What else has changed in the way we look at this disease, in the way we treat it?>>Well, as I said, the emphasis has changed to really starting more aggressive treatment early on.>>Okay.>>We also recognize that there can be complications. The leading cause of morbidity in patients with rheumatoid is actually cardiovascular disease.>>You know, something you said that was really, I thought, quite important — you said that you had the biologics and your joint disease looked better, but you didn’t say that you weren’t sick. You said you were still sick, that there’s something still going on. You still have rheumatoid arthritis.>>Well, I… It’s hard because I don’t even remember what feeling normal is. I think, from that onset, I’ve forgotten how I felt before then. So my baseline is not what it used to be. My baseline is still chronically ill me. So I definitely feel better than I did when the disease was uncontrolled, but I knew, even when I got well, that this was something that was going to be with me. There was no going back to being totally normal.>>So, what else in your life has changed because of rheumatoid and what’s going forward from there?>>Well, the physical impairment was the biggest, just I couldn’t — I used to love basketball, really doing high-impact stuff, running. I haven’t jogged since the RA started. I haven’t played basketball. I can’t do anything high-impact.>>Is that because it hurts or because –>>Because it hurts, the feet were damaged, and I still have a lot of issues with my feet. I’ve had multiple surgeries on the feet. So, that was an impact. I think just kind of an awareness of — Again, I think, psychologically, the disease really takes a toll, that you start to see yourself — even when you’re well, you still feel that you’re sick. And so I know, for me, emotionally, it’s definitely been something where — it’s been unbelievably helpful, the rise of the Internet and the rise of being able to share with people, because rheumatoid arthritis, there are only about 1.5 million people who have this disease, and to discover each other online — because, again, when I was diagnosed, I didn’t know anyone who had the disease. I couldn’t talk to anybody as to what to expect, so I think it’s really been helpful to be able to talk to people and kind of share our experiences, and, even still, it’s predominantly women who have this. So there aren’t a lot of guys. You know, I’ve met a couple other guys, one who was a baseball player. We’ve kind of shared notes on it, but it’s really helpful to be able to share your story with someone who’s going through it and to share, you know, “Here’s what I learned, here’s what I’ve gone through, and here’s what’s helped me.”>>So, if you were to give advice to somebody, what would you tell them?>>Well, I think the thing I would tell anybody is trust your body, listen to your body, and trust yourself. And even if the doctors are telling you there’s nothing wrong, if you know something’s wrong, don’t take their opinion as Gospel, that listen — your body is telling you what’s going on, and no one knows it as well as you do, so to really continue to pursue that. I think the lesson I’ve learned is you have to be your own best advocate because nobody cares about your health as much as you do. No matter how wonderful a doctor you have, they’re not as invested in it as you are, and so really to be responsible. And I think that’s something that’s changed in medicine, is it’s not that paternalistic anymore. It is more of a partnership, but to realize you have to drive it and you have to be clear on your goals and what you want out of life and to know what that is and to find a doctor who will partner with you on it.>>Well, that’s an amazing statement, and I really want to thank you for joining us. It’s important. I want to thank everybody for being here today — our studio audience. You’ve just been great. And of course I want to thank everybody at home for watching, as well. Remember, you can get more second opinions and patient stories on our website at secondopinion-tv.org. And you can find us anytime on social media. I’m Dr. Peter Salgo. I’ll see you next time for another “Second Opinion.” [ Applause ] ♪♪ ♪♪ ♪♪ ♪♪ ♪♪>>Behind every heartbeat is a story we can learn from. ♪♪ As we have for over 80 years, Blue Cross and Blue Shield Companies are working to use the knowledge we gain from our members to better the health of not just those we insure, but all Americans. Some call it responsibility. We call it a privilege. “Second Opinion” is funded by Blue Cross Blue Shield.>>”Second Opinion” is produced in conjunction with UR Medicine, part of University of Rochester Medical Center, Rochester, New York.