Extreme Inflammatory Skin Conditions: Understanding Erythrodermic Psoriasis Daily Dose February 3, 2009 Abby Van Voorhees, M.D. Jeff Roberts Vina Laurino Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you’re your own doctor, that’s how you’ll get care that’s most appropriate for you.

Introduction Andrew Schorr: Many people are aware of psoriasis, but few people understand erythrodermic psoriasis, one of the serious subtypes. We will help you understand it as we do on Patient Power coming up next. Hello, and thank you for joining us for this live webcast Patient Power. I’m Andrew Schorr broadcasting from Seattle. Thanks to the National Psoriasis Foundation for helping us today and connecting us with two patients you are about to meet, and also you’ll be meeting a leading dermatology expert and psoriasis expert in a minute from the University of Pennsylvania in Philadelphia. So let’s talk about psoriasis. Now you watch and there are a number of medications to help with it in their advertisements on TV, and that’s great that the field is moving on. People can get help. Typically the type of psoriasis that is being treated is plaque psoriasis, but there are subtypes, and one subtype that is concerning, people often need hospitalization for it, is called erythrodermic psoriasis or EP. We’re going to discuss that today, take your questions, and help you understand it. If you are living with psoriasis, plaque psoriasis, can this develop? The answer is yes. What do you do about it? We’re going to find out. Vina’s Story Andrew Schorr: I want you to meet two people who have been living with erythrodermic psoriasis. Vina Laurino is in treatment for it right now. She joins us from San Diego California. Vina, thank you for being with us. So you are in treatment. What is erythrodermic psoriasis for you? What happens to your skin, and how do you feel?

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Vina: Well what happens to my skin is I just turn all red. My psoriasis plaques turn to red and start scaling a lot, and along with that it kind of messes up my body temperature. My body ends up putting out a lot of heat, and it could get quite painful at times too with the swelling. Andrew Schorr: Now you’ve been hospitalized for this. Right? Vina: Yes. I’ve been hospitalized several times for erythrodermic psoriasis. Andrew Schorr: And you are currently in treatment I understand trying a new drug for it. Is it helping? Vina: Yes. It’s slow, but I’m rooting for it. I really wanted it to work so I’m keeping up with the treatment. Andrew Schorr: Now you’ve had plaque psoriasis like the typical patient with psoriasis, and you’ve also had pustular psoriasis. Right? Vina: Yes. Andrew Schorr: Or erythrodermic psoriasis. So tell us about the change. You’ve been living with psoriasis I think, what, since 1979? Vina: Yes. Yes. In my earlier teen years when I first developed the plaque psoriasis I used to form thick plaques, and I always felt like I had alligator skin, and it was just, to me it was painful, and I don’t want to use the word, but horrifying for me because it would start bleeding, drying, cracking, and I was just miserable with it. Andrew Schorr: How is erythrodermic different? You mentioned about the temperature, regulating your temperature, and you feel real hot. How would you describe it as being different? You are red all over.

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Vina: Yes. Well now with the erythrodermic psoriasis I’m kind of, it’s not as bad as plaque psoriasis, but you know it’s different in ways. With the erythrodermic psoriasis I just have to deal with the redness and the swelling, and not as much scaling. Jeff’s Story Andrew Schorr: Okay, let’s meet someone else who’s dealt with this too. Actually he was honored in 2008 as the National Psoriasis Foundation volunteer of the year. He joins us while he is working at a trade show in Phoenix, but normally he is in Kansas City, and that’s Jeff Roberts. Jeff thanks for getting back to your hotel room to join us. So you’ve been living with psoriasis for 23 years. I understand you’re 34 now, and then what happened last April that was different? Jeff: Well last April I went through a kind of a change in my medication. The medication I was currently on at that time just kind of ceased to be very effective, and so in discussions with my dermatologist we decided to try a change in medication to alter, and hopefully continue on treating my plaque psoriasis at that time. Andrew Schorr: Now I’m sorry, was it the change in medication that triggered the erythrodermic, or what happened? Jeff: It didn’t actually, yes just the change, I don’t know necessarily if it triggered it, and I’m sure the doctor can speak to more of that, but just getting off the one treatment that I was on and going on to another, the time didn’t, I guess, didn’t work out exactly right as far as the new treatment didn’t start picking up. So I went into an erythrodermic flare actually at that time. Andrew Schorr: So how was that treated? How long did that last for this erythrodermic flare? Jeff: Fortunately enough through my involvement with the National Psoriasis Foundation I was educated enough in speaking to other people who had experienced erythrodermic flares, and so I kind of understood and knew what was going on, and actually was able to contact some great people that I had met over the past few years to kind of talk myself through it because I kind of understood, and so I was able to get treatment right away, and within probably about six weeks I kind of had things back under control, but it was probably a good three to four months before the erythrodermic, the scaliness of the skin actually kind of subsided and kind of started to turn back to the plaque psoriasis. HR020309/0223/AS/sp-lm

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Andrew Schorr: All right, let’s put all this in perspective with a leading expert. Now who’s the person that is going to put all this in clinical perspective for us? I can think of no one better than Dr. Abby Van Voorhees. Dr. Van Voorhees is well known in the psoriasis field. She’s Assistant Professor at the University of Pennsylvania Health System in Philadelphia, and she’s Director of Psoriasis and Phototherapy Treatment Center. Dr. Van Voorhees thanks for joining us. Dr. Van Voorhees: Thank you for such a lovely introduction. Understanding and Diagnosing Erythrodermic Psoriasis Andrew Schorr: Thank you. So help us understand how erythrodermic psoriasis is different from plaque psoriasis that probably a lot of our listeners know, but they don’t really know this other type as well or what the difference is. Dr. Van Voorhees: Sure. Well erythrodermic psoriasis is one of the rarest forms of psoriasis, and we guess that it probably occurs in about one to two percent of all patients with psoriasis. So it’s not very common. Having your skin turn diffusely red is something we can see actually in several different dermatologic conditions. For example psoriasis is one, but sometimes by bad eczema can cause that to occur, various different things. So the first step when somebody presents to a physician when their skin is diffusely red is determining for sure that they really do have erythrodermic psoriasis. So that’s the first step usually for many patients. I think while sometimes you can have psoriasis that’s more the ordinary plaque kind of psoriasis turn into erythrodermic psoriasis that’s not always the case. So that sometimes people can present with their skin just being diffusely red, like all of a sudden, and it’s only upon further investigation that we can determine that psoriasis is really the cause. What makes us sure that they are part of the same spectrum of condition, all under that psoriasis umbrella, is that if you biopsy the skin in all these situations, whether it’s erythrodermic psoriasis or in plaque psoriasis, actually under the microscope the biopsies look very much the same. What we don’t know yet, and it is certainly a very intriguing possibility is whether or not they are really the same disease that’s just either more intense or less intense, suggested for example by Jeff’s comment that it seemed like he had already had plaque psoriasis, and then it became more severe with some medication changes, and then turned into erythrodermic psoriasis and then returned back to his more regular kind of psoriasis, the plaque psoriasis. That would suggest that it’s the same gene causing this entire kind of HR020309/0223/AS/sp-lm

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disease in him, or alternatively it’s possible that it’s a different gene that’s causing erythrodermic psoriasis from that which we see that causes plaque psoriasis, but that’s something we are working on very intently, but we don’t know the answer to that yet. So that remains uncertain. Andrew Schorr: Now I know you are one of the leaders in research in looking into this, and this is no trivial matter. I know particularly in older people it could be life threatening, and I know typically there can be hospitalizations. Why is this subtype so serious? Dr. Van Voorhees: Well this is a very serious subtype of psoriasis, and partially as your first speaker suggested the skin becomes red all over, so it’s almost as if someone has had a burn to their skin. That’s part of why it can be so severe because it involves so much of the body. What happens is the blood vessels in the skin dilate, and much of the blood instead of normally our blood primarily goes to serve our inner organs like our heart and our lungs and our liver, when the skin becomes diffusely red like it does in erythrodermic psoriasis a greater percentage of that blood gets shunted out into the skin, that’s why it looks red to us, but as a result there is not quite enough to go around to the rest of the organs. So what the body does to compensate is it makes the heart beat faster. So that way it can move the blood that it needs for our internal organs faster so that those places can get enough oxygen, etc. So I think it’s a consequence while some people can keep pace with that faster heart rate, other people can’t, and we see all sorts of problems with this kind of psoriasis where people develop problems as a result of how quickly their heart has to work. So for example sometimes if people have problems with their heart as a baseline and then they really can’t keep pace, and this causes difficulty for them. So that’s part of the problem. The other part of the problem is as one of the speakers already suggested, is the skin swells, and it’s very, very uncomfortable. So that too is a result of how much blood is sitting in the skin, and when those blood vessels get so engorged sometimes some of the fluid leaks into the skin like the lower legs for example, and people find that they get a lot of swelling and those kinds of things. So for all of these reasons patients with erythrodermic psoriasis can be really very sick. Andrew Schorr: And I would imagine there is a risk like with burns of infection, and Vina earlier was talking about just difficulty with temperature, either feeling hot or just your skin’s ability to regulate the temperature of your body. Dr. Van Voorhees: Well and that’s very common what she described. In fact it really can be explained very directly by how much blood is sitting in the skin because since those blood vessels are dilated so wide we experience the temperature much stronger than if we contract those HR020309/0223/AS/sp-lm

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blood vessels, and then our blood that’s traveling through those superficial blood vessels, doesn’t cool as much. So many patients who have erythrodermic psoriasis complain that they just have shaking chills all the time. It can really be completely disabling and uncomfortable. Overlapping Medications Andrew Schorr: We are going to talk about treatment in a minute, but here we have Jeff and Vina who’ve been living with psoriasis most of their lives, and that’s often the case with people, and they have had the more common type, plaque psoriasis, and now we are talking about this rare, but quite serious, either different disease or aggravation of the disease. How do we know if it’s going to happen or when it’s going to happen? Dr. Van Voorhees: Well I think really we don’t know, and certainly that uncertainty is an uncomfortable fact for some patients with psoriasis, especially if you’ve had an occasional outbreak of this because it’s something unpleasant, and it’s not something you really are, you are really hoping to avoid it in the future. But there is really no way to predict when psoriasis might flare, or at least not that we are certain of, but certainly there are many, many reports of people having their psoriasis flare for example when medications are changing, but most of the time it doesn’t occur in that setting, so to suggest that that’s maybe a point of vulnerability, but by no means is it inevitable that if a medication is switched from one to another will this be a complication. So I think there are some vulnerable points for patients, but I don’t think we really know enough about the genetics of the disease to really understand why it might flare intermittently like that. Andrew Schorr: I just want to go over that point you were just making for a second about what we know or what we don’t because in our search we’d seen erythrodermic psoriasis might be precipitated for instance by a quick withdrawal of oral corticosteroids, prednisone, and I’d like you to comment on that, but then we have people who, there are a number of medications fortunately that we have now for psoriasis, and at some point somebody might switch from one to the other, and I can just see their heart beating fast, worried, ‘Oh my goodness, is there another shoe that is going to drop during this transition?’ Dr. Van Voorhees: Well your example is a good one. So yes one of the risks for patients who are on psoriasis medications is that if they are put on internal steroids for whatever reasons. They may also have asthma for example, and they may need it to help their breathing, or they may be put on it because they developed a patch of poison ivy and a primary doctor may think it’s a good idea so that their poison ivy isn’t so itchy. So they could be put on it for reasons that are completely unrelated of course to their psoriasis, but there is a frequency that as patients come off of those steroids that it can cause a flare of psoriasis, and sometimes that flare can be of the erythrodermic type. HR020309/0223/AS/sp-lm

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Now let me caution though, there are many patients who are taking steroids for one reason or another and tolerate it reasonably without having those kinds of terrible flares. Exactly who gets it and who doesn’t is something that we really haven’t been able to study in a very direct way. I mean some people suggest it may have to do with how quickly the steroids are discontinued, but we really aren’t sure that that’s true. There are also some of these new biologic medicines also that we worry if they are stopped abruptly, and other treatments are not put into place to protect the patient then they too could have a very serious flare of their psoriasis. I think when we know that a patient is at risk, for example if I’m transitioning a patient from one internal systemic medicine to another internal systemic medicine what I try to do is I try to anticipate how quickly the first medicine is going to come out of their system and how quickly the second medicine that I’m switching to is going to start really being effective. It takes often a little while for medicines to kick in so to speak. So I try to anticipate what that kick in time will be, and overlap medicines more. So that way we don’t have people having those kinds of bad breakouts of psoriasis be they of the erythrodermic type or even sometimes just worsening regular plaque psoriasis. So we do try to anticipate that when we can. Unfortunately we can’t always catch it, but that certainly is the goal. Andrew Schorr: Well my question relates to kind of guidelines in that way. So you in dermatology and the sub-area of specialists in psoriasis are talking all the time, and as you said there’s a lot of new medications. Now we’re talking about transitioning between one to the other. Are there guidelines beyond what you do at the University of Pennsylvania that help doctors everywhere kind of figure out this overlapping? Dr. Van Voorhees: Well I think we’re just beginning to speak about that and try to communicate that with our colleagues so that I think that information is being disseminated. I think there are some, for doctors, there have recently been published what we call the guidelines of care put out by the Dermatology Academy that talks about how best to use some of these systemic medications, be they the newer ones, we call them the biologics, or be they the more traditional ones, we call them the conventional systemics, but yes we are starting to update those, and one was published say about six months ago, and one is soon to be published. So I think we are trying to get that information out because it is important to patients to try to protect them, especially with certain medications that we know put people at a little more risk. Andrew Schorr: Right. Now as the host I’m going to ask one more question, and then we’ll take some callers and e-mail questions. We are visiting with Dr. Abby Van Voorhees from the University of Pennsylvania, psoriasis specialist. Dr. Van Voorhees so Jeff earlier, he had this flare that turned out to be erythrodermic. Vina has had it I think a few times, and so if someone has had it once, are they more likely to have it again, or do we even know? HR020309/0223/AS/sp-lm

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Dr. Van Voorhees: Truthfully we don’t really even know, and there is probably a difference in the way Vina’s erythrodermic psoriasis might be handled from the way Jeff’s. For example my guess is, although Jeff didn’t elaborate in great detail, is that his erythrodermic psoriasis came up very, very acutely, and so therefore the medications that he required needed to work very, very quickly because his body wasn’t used to having this problem with all this redness in the skin and dilated blood vessels. In contrast Vina’s erythrodermic psoriasis I suspect she’s grown more used to it. Her heart has learned how to compensate so she probably is able to keep pace with the erythrodermic psoriasis a little more comfortably, and as a consequence while she might benefit from the medications that Jeff might use as well there probably are additional medications that she might be able to take advantage of that are a little slower to work but can be very, very successful as well. So there’s a lot to understand with the erythrodermic psoriasis; understanding how severe it is, how quickly it comes on, how uncomfortable it’s making a patient, how much it may or may not be compromising their heart, and their heart’s ability to pump as quickly as the blood supply requires. All those are really important questions that kind of need to be digested when a patient is sitting in front of you saying, ‘How best should I treat this?’ Andrew Schorr: Now Jeff mentioned that he’s a pretty savvy guy because he’s been involved with the National Psoriasis Foundation for a long time, and as I mentioned was the national volunteer of the year in 2008. So he was kind of plugged in and knew ‘Do not pass go, call my doctor, tell him what I’m experiencing.’ What guidance would you give our audience as far as what to look for and any importance as far as getting in touch with your provider quickly? Dr. Van Voorhees: Well I think if your skin is behaving atypically you know if your psoriasis is just maybe not improving as quickly as you’d like, but it looks the same today as it looked a week ago, and the same a week ago as it looked a month ago. Then probably waiting until your next appointment or perhaps calling the office and getting an earlier appointment if you’re uncomfortable certainly is very reasonable, but if you’re developing lots of new psoriasis spots or your skin is changing in its character so that it’s going from being just a couple of spots on your elbows and knees to feeling like your skin looks diffusely like you’re tomato I think that’s something that your doctor needs to know about right away, and either it’s something that they should be treating you for, or if they don’t feel that they have quite that expertise then they ought to be sending you to a medical center where there is that expertise. Hopefully that’s the kind of thing that should get pretty quick attention Andrew Schorr: Okay that’s all good advice. Now in our second half hour, we are going to take a little break in a minute, and in our second half hour we’re going to talk with Vina and Jeff a little more about their personal experience, and we’re also going to find out what do you HR020309/0223/AS/sp-lm

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do about it. If it in fact is this rare but serious subtype of psoriasis or erythrodermic psoriasis what do you do? I mentioned that Vina has been hospitalized. Vina, I just want to check. You’ve been hospitalized more than once for this? Vina: Yes, more than once. Andrew Schorr: Yes, okay, ad her psoriasis has actually been so serious over time that she’s actually on disability now. So Jeff is busy at a trade show. He’s doing well. It’s going to vary by patients, but we are going to find out more about that, and then what can be done in the hospital, and also we mentioned about people who may have underlying problems, heart problems, maybe people are older or have other conditions going on and how that may be dealt with in that way too. This is what we do on Patient Power. This is a live webcast, and thanks to the National Psoriasis Foundation for letting so many people know. We did get some e-mail questions in from Sean in San Diego and Andrea in Anaheim and a Sandra somewhere in Florida, and we’re going to talk about all that, including as we mentioned, genetics. We’re going to talk about is there family connection here. I want you to know that Dr. Van Voorhees has been researching this, and actually she has an article coming up with other authors as we learn more about this. So stay with us on Patient Power, and if you are saying, ‘Boy I wish a family member or friend heard it,’ we will have a replay up certainly by tomorrow, and then we’ll be adding a transcript that you can discuss with your own doctor too. We’ll be right back with much more of Patient Power right after this. Welcome back to our live webcast where we are talking about a subtype of psoriasis, an extremely inflammatory-type, erythrodermic psoriasis. Now it is uncommon, but if it happens, you’ve been living with psoriasis maybe decades and then this happens, you’re concerned, and so we’re going to find out about what to do with it. We have with us Jeff Roberts who has been living with plaque psoriasis for many years and had a flare that was determined to be erythrodermic psoriasis last spring in April of 2008, and then that was treated successfully. He’s joining us from Phoenix today where he is working at a trade show, and then Vina Laurino joins us from San Diego. She’s had psoriasis many years and has been hospitalized several times when it has developed into this very angry red, hot erythrodermic psoriasis, and then putting it all together for us is Dr. Abby Van Voorhees who is the Director of the Psoriasis and Phototherapy Treatment Center at the University of Pennsylvania in Philadelphia. Other Treatment Options Andrew Schorr: Dr. Van Voorhees so we haven’t talked yet about treatment. So we have a sense that some people will need to be hospitalized; Jeff wasn’t, Vina has been several times; so I know it varies, but help us understand the kinds of tools you have to treat this. HR020309/0223/AS/sp-lm

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Dr. Van Voorhees: Well there are many different medicines, and many of them are used to treat all kinds of psoriasis so they are not just reserved for patients with erythrodermic psoriasis, but people who are probably most severe or who’s psoriasis has come on most acutely we usually turn to some of our most powerful and quick-acting psoriasis medications. Those are probably cyclosporin and infliximab, one of the new biologic agents. Those medicines do have risks, and it is important that the patients have a good conversation with their physician once those medicines are being considered prior to starting them. So there are some risks, but in the setting of somebody whose skin is really that severe sometimes that risk/benefit ratio becomes reasonable, and that becomes a very good treatment kind of choice. For patients either with their psoriasis is not so severe, if it’s not quite so acute, then it has to be made better so, so quickly sometimes we use medications like methotrexate and another medicine known as acitretin. Those are medicines that can be very effective. They just take a little longer to work, and so I think that’s something the patient and their physician needs to digest so they can make sure that makes sense in the patient’s specific situation. Other medicines, like some of the other biologic medicines, we don’t really know as much about. It’s not that we know that they wouldn’t work in treating erythrodermic psoriasis, it’s that this is a fairly rare kind of psoriasis, and so we just don’t have a thousand patients who have been diagnosed with this condition to test to see how good or poorly that patients might respond to it. Probably of the biologics we probably have etanercept probably has a little bit more information although it’s still pretty scant, and the others really become limited to case studies, and the problem with case studies is just that it’s hard sometimes to know whether a patient’s response may have been a coincidence, or maybe it was just a unique situation, or maybe the patient was also on something else, and so by their very nature case studies are hard to interpret. It therefore becomes difficult to know for sure if those medications at this point really would be the go-to kind of medicines that we would like to have on the top of our list. Now that we are growing a little more comfortable with these other medicines for other kinds of psoriasis hopefully we can yet more people to turn their attention to this less common form and say, ‘Okay, so now what about in this situation?’ So we still have more to learn. Andrew Schorr: Dr. Van Voorhees just to be clear though the drugs that some of them are now advertised on TV for psoriasis, the approval for this new age of medicines now in psoriasis though is for plaque psoriasis, and what you are talking about is trying them on erythrodermic psoriasis and gaining experience with them.

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Dr. Van Voorhees: That’s correct. So these medications we know their effectiveness in plaque psoriasis. That is definitely true. The pharmaceutical companies definitely need to test these medications in that kind of patient in order to demonstrate effectiveness in those settings, but what we don’t know is we don’t have a comparable trial with many of the biologic agents with patients who have erythrodermic psoriasis. So we just don’t know. So we’re going more based on reports, and as I said reports have strengths and weaknesses. It’s certainly interesting and it’s certainly exciting when we hear a report that a medication was very, very helpful in a rare kind of situation, but we really don’t know how helpful it is. Andrew Schorr: Right. This is totally anecdotal, but Jeff you were switched medicines, and if I have it right you are on methotrexate and I think Remicade. Is that right? Jeff: Yes, that’s my current treatment. Andrew Schorr: And that’s what you were switching to I guess with the Remicade, and the erythrodermic psoriasis did resolve after, you said it was a total of about three months, right? Jeff: Right. Yes. Actually I was switching from another biologic to a different biologic and then was put on the Remicade after my flare. Andrew Schorr: Okay, and then Vina in your case now the treatment that you are undergoing includes Humira I think. Right? Vina: Yes. Listener Questions Andrew Schorr: Okay. So we’re in this new world of trying to see what can work, and that’s really the art of medicine. I should mention I’m a leukemia survivor, and while I was in a trial one of the new medicines that was used for me was a medicine that had been developed for a different type of leukemia. Fortunately it worked, but it was actually part of a clinical trial, but often experts such as Dr. Van Voorhees will use their art of medicine to see, particularly in erythrodermic to see is there help that someone can get from a medicine that’s on the market and available.

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Dr. Van Voorhees we’ve gotten a few e-mail questions so let me pose some to you. This one is one I’m sure everybody wonders about. Sandra in Florida wrote us, she wants to know whether erythrodermic psoriasis can be inherited. So any inherited genetic connection there? Dr. Van Voorhees: You know that’s a very good question Sandra. What we certainly know is psoriasis is inherited. We definitely see that parents who had psoriasis have a higher likelihood of having children who have psoriasis. Not necessarily, it’s not a given, but we certainly know that psoriasis in general is inherited. We really do not know whether erythrodermic psoriasis in particular is inherited, and in fact I would suggest that the answer probably will be no because what we do know is that the severity of psoriasis does not seem necessarily to track from one generation to another. So for example you could have a parent with the worst case of psoriasis in America, and the child might develop psoriasis but they may only have a limited form. So the severity of the disease does not necessarily correlate. Of course you certainly can have a family where a parent has severe psoriasis, and the child also has severe psoriasis, but it’s not definite. So as far as we know erythrodermic psoriasis as a type is not inherited, but we have a lot more to learn, and as we finally come to understand the genetics of psoriasis we’ll be able to ask those questions that Sandra is asking and find out the answer for the first time. Andrew Schorr: Okay. Now Andrea wrote in from Anaheim, California with something that I would think is related to all that blood being brought to the surface of the skin, and you can explain further. She says, ‘What happens if someone develops “capillary leak syndrome?”’ Dr. Van Voorhees: Well if I am understanding what Andrea is asking about I think what happens is that people get a little swelling of their legs because the fluid leaves the vessels because they are so swollen and engorged, and it leaves the vessels, and people get swelling usually in the lower part of their legs. Very often patients will be seen by their primary doctor and the primary doctors will get worried that this is a sign of congestive heart failure or other heart-related kinds of concerns, and happily I can usually reassure patients that this is a manifestation of their psoriasis and in fact will go away as the psoriasis improves, but it is certainly uncomfortable. Patients will often tell me how they have trouble putting on shoes, and the skin feels tight and makes it hard to flex the ankle, and the patients certainly don’t like it. It’s certainly very uncomfortable. Andrew Schorr: And Sean from San Diego had a question I think we covered, but I want to make sure that we got the answer for Sean. So he had erythrodermic psoriasis once, and he’s just wondering what’s the chance that he’ll get it again, and I guess the answer you told us earlier is that we just don’t know. HR020309/0223/AS/sp-lm

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Dr. Van Voorhees: Yes we really just don’t know. I mean there is probably a reasonable likelihood that Sean will have psoriasis of some form again, but he could really function the rest of his life with really more ordinary plaque psoriasis, and never again have that severe kind of psoriasis. But I think what triggered him in the first place, and whether he might be exposed to that in the future, and whether it’s really controlled based on the gene turning on or whether it was controlled based on some environmental factor, maybe he developed a very bad burn, maybe he developed a problem with the medication. Those kind of features we don’t know enough to answer Sean very specifically, but I do think that the chances are he will have psoriasis going forward. Andrew Schorr: I don’t want to worry people sick because first of all I know we are talking about a rare situation, but in our reading we came across something called Zumbusch psoriasis, which I had never heard of. It talked about it being a serious condition. So what are things, not to worry people, but what would be complications of this? Dr. Van Voorhees: This type of the psoriasis that you are asking about is another rare form of psoriasis that can look a lot like erythrodermic psoriasis, but in addition it has little pustules, almost like a teenager might have when they have an acne pustule, you know like a little pimple, and what this is, is the skin will look red, and it will look like it’s studded with little pimples on it. Sometimes it doesn’t involve the entire body the way erythrodermic psoriasis does. Sometimes it could just be kind of like wide swatches of skin. These are both fairly uncommon types of psoriasis. They are both very rare, and actually I think given today’s approaches and today’s medicines, both generally can be very well treated. Andrew Schorr: Hopefully it’s sort of a thing of the past at least as far as something to worry about. Here’s a question we just got in from Brenda who has erythrodermic psoriasis. She wants to know are there any home remedies to help with the itching and the pain. She’s had various prescriptions, and they just haven’t helped. Any suggestions? Dr. Van Voorhees: I would suggest that she go back to see her dermatologist. The itchiness and the pain that is associated with erythrodermic psoriasis is inherent to the psoriasis itself. So getting the psoriasis to respond to a medication, be it whichever one works in that person, is the key. Really topical medicines may be a little soothing, but they really are not going to do the trick to really make Brenda really feel comfortable and no longer itchy or painful. I think the internal medications are really what are really most necessary, and so patients often will ask me, ‘Well what about antihistamines,’ or ‘what about pain medications?’ I try to explain to them that antihistamines are terrific medicines if you are releasing histamine, but psoriasis is not a histamine-related disease, and so antihistamines, while HR020309/0223/AS/sp-lm

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they may make some people a little sleepy so that they don’t itch really aren’t very helpful in psoriasis, and narcotics are things really we prefer to avoid in patients. Really it makes much better sense to treat the underlying disease. So I would really encourage Brenda to seek the care of her dermatologist, and let them know that if whatever she’s doing is not helpful, then they really need to up the ante and work with her to get her skin to come under control. Andrew Schorr: Great advice. Now I wanted to do a little patient-to-patient information too. Vina, you’ve been through this several times, and I’m sure you’ve experienced all of this. Any suggestion you’d give Brenda? Now obviously everybody needs to check with their doctor on their own personal situation, but you’ve been at home with this as well. Any strategies that have worked for you? Vina: You just need to find a good working relationship with your doctor to manage and take care of your psoriasis, and… Andrew Schorr: Communication is always important I think. Vina: Yes. Yes. Thank you. Andrew Schorr: And Jeff was saying that. Jeff didn’t pass go; he called his doctor. Jeff, how about you? Any things, when you were going through this over three months; any things that helped you? Obviously you were relying on your doctor and these medicines, systemic medicines that were helping. Any other pointers you would give or just a strategy as a patient? Jeff: Yes. The first thing is just to recognize that something’s going on that you do definitely need to address, and then if you notice that change, do get in contact with your dermatologist and work with them, but also establishing a good support network whether it’s a family member or friend, somebody to talk with to talk some things out, and through the National Psoriasis Foundation even in the online community there is a great group of people that through the Foundation that if you contact them they can put touch with people who have experienced erythrodermic flares and our experience with that type of psoriasis and understand what’s going on, and they are just great resources to talk to so you can kind of talk to them and you can say, ‘Hey, I’m experiencing this. Is this what’s common or what? What should I be aware of? What should I do? What are some of the things that I should be looking at or watching out for? Kind of what’s around the corner next?’ That’s really what helped me in allowing me to kind of just understand what do I

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need to watch out for so that I’m not just sitting back and going, ‘Okay. This is happening,’ and just dealing with a dermatologist directly. It was the support I got through some great friends who really helped me through it. Andrew Schorr: Right. Great advice, and I think for people listening who may well have heard about this program through the National Psoriasis Foundation, we are all in it together, and it’s a lifelong concern maybe for more than one person in the family, and there can be these rare occurrences that happen, and you want to be aware of it. Hopefully it won’t happen to you. If it does as it did happen to Jeff and it’s happened to Vina several times, then you have relationships that can support you as you get the treatment you need and the emotional support as well. Dr. Van Voorhees here’s a question that came in from Ronald who is listening in California. So he said, ‘Do we know anything about any foods that can trigger erythrodermic psoriasis, and if we do are there studies he can look up that talk about that?’ Dr. Van Voorhees: Unfortunately for Ronald I’m not aware of any foods that explicitly have ever been shown to trigger erythrodermic psoriasis. Now sometimes patients will say to me about regular psoriasis that if they eat certain foods that it seems to make their psoriasis worse, but even there if someone says to me for example, if they eat a strawberry then their psoriasis gets redder and more irritated, but even there in that specific situation of course that person could avoid strawberries, but there is really not any good evidence that specific foods, either avoiding them or eating a lot of them, really will control psoriasis to begin with, and we certainly know much, much less about this less common variety. So unfortunately for Ronald I don’t think we can give him any things to try to be sure to include or things to be sure to try to exclude. Andrew Schorr: Okay. When we were doing some research on our own related to this we often saw this brought up. Sometimes there were other illnesses that came up that there were questions about scleroderma and lupus, other autoimmune conditions. Is there any connection between these? Dr. Van Voorhees: There’s not a connection between lupus and scleroderma and erythrodermic psoriasis, but I think there certainly is a connection between other diseases and psoriasis. So for example we’re learning that sometimes high blood pressure and obesity and diabetes are associated with psoriasis, but again we don’t have the specifics teased out down to this rare form of psoriasis. So for example we don’t know whether our erythrodermic psoriasis patients have more risk for these related diseases or less risk or the same risk. Those are things that we just don’t know yet.

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Andrew Schorr: So Vina a fellow named Mitch in Illinois was wondering how are you doing now recovering from the erythrodermic psoriasis? I think we said you were taking Humira and maybe another medicine too. How are you doing? You’re not in the hospital now. Is it getting better? Vina: Yes. If feel like it’s getting better. I’m not so bright red. My skin is a lot more calm looking. Andrew Schorr: Okay. Well we wish you all the best with that. Dr. Van Voorhees, Jeff had mentioned that he was kind of like three months going on until he saw it resolved. So do we have any experience that when you get treatment for erythrodermic psoriasis how quickly you can hope to see some resolution or improvement? Dr. Van Voorhees: Well I think that’s a really good question. I think Jeff’s situation is often very much what we see. I think it depends on what medicines patients are brought under control with, and how quickly they work. So I believe Jeff spoke about being put on methotrexate and then subsequently on Remicade, and methotrexate you know usually can take a good two months before it really can exert its full power. So the fact that it will take two or three months to really get it optimized is really not an unreasonable course for using that medicine. The other medicine that he’s subsequently been put on, the trade name is Remicade, the chemical name is infliximab. That one can work a little quicker. So it’s really just depends on what medicines makes best sense for the patient to be started on at the moment in terms of how quickly it will resolve, and a lot of factors have to be put into that cauldron because it depends on how uncomfortable the patient is and how much in jeopardy their health is and how comfortable or not comfortable patients might be about certain risks, and also just how different people respond to different medicines. Some people respond more quickly than the person next to them. So there are very, very many factors, but it can take several months, and even what we do in the short run in terms of turning this kind of psoriasis off may not be what we want to have people stay on for the long run. So we may want to use one set of medicines to just kind of get the skin to cool down, and then another set of medicines to kind of be more the day in and day out workhorse so to speak. So there is a lot of nuance to trying to get this disease to respond and trying to keep people out of the hospital more than we used to and trying to get their skin to be without pain and not so uncomfortable as quickly as possible.

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Andrew Schorr: Well Dr. Van Voorhees as I speak with a specialist such as yourself I’m always impressed with the art of medicine. We probably need to talk about that more often because as you described there is a lot we’re learning about this rare condition, and there is a lot of thought that goes into what to do when. Jeff Roberts who has joined us from Phoenix, I’m glad you’re doing better, and I want to thank you for joining us, taking a break from the trade show. Now you’ve got to get back on the trade show floor. I’m glad you’re doing well, and I want to congratulate you on your recognition with the National Psoriasis Foundation in being last year’s Volunteer of the Year. All the best to you Jeff. Jeff: Thank you very much. We had a lot of great fun in Kansas City this last year in connecting a lot of people. Andrew Schorr: Yes. Thank you. Keep up the good work. Vina Laurino joining us from San Diego, Vina all the best in your recovery. I hope you can leave this in the rear view mirror as I like to say, and just enjoy living in a great place in San Diego. All the best to you Vina. Vina: Thank you. Andrew Schorr: And Dr. Abby Van Voorhees from the University of Pennsylvania where you are director of the Psoriasis or Phototherapy Treatment Center, thank you. We’ll look forward to that article you have coming out, and thank you for your dedication to people with psoriasis, and hopefully you’ll have more medications, more treatment, more guidelines that will help doctors worldwide in helping people whatever their version of psoriasis is. Thanks for all you do. Dr. Van Voorhees: Oh you’re very welcome, and I want to just stress again there are so many new treatments now that everybody should seek care because really there’s so much more that we can offer. Andrew Schorr: Right. And thank you. All the best to you doctor, and also I want to thank the University of Pennsylvania for helping us today and the National Psoriasis Foundation there for you day after day helping bring you education like this, connect you with leading experts and inspiring patients and answering the questions about psoriasis whatever they may be. You are not alone.

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Well this is what we do on Patient Power, and I’m delighted to do it. I’m Andrew Schorr. Remember knowledge can be the best medicine of all. Have a good day. Please remember the opinions expressed on Patient Power are not necessarily the views of Health Radio, our sponsors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. Please have this discussion you’re your own doctor, that’s how you’ll get care that’s most appropriate for you.

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