A podcast series about what it takes to live better with psoriasis — from experts who treat it and patients who live with it
If psoriasis has made you retreat from your life, it’s time to get clear about treating health differently.
Having psoriasis isn’t easy. It can be physically and mentally challenging, causing uncomfortable symptoms and making you feel disconnected from loved ones and daily activities. But the right information, treatment plan, and support can make a big difference in your health and happiness. This podcast series is here to help.
Host and psoriasis patient David Brandt guides listeners through important topics about living better with psoriasis. Each episode includes relatable insights from fellow patients and key information from leading dermatologists and other experts.
GETTING CLEAR ON Psoriasis Episodes
Check out episodes of Getting Clear on Psoriasis below and wherever you listen to podcasts. Be sure to subscribe for access to future episodes. Tell your family and friends to listen, too, so they understand what psoriasis is all about.
Episode 7
Importance of Proper Treatment
It bears repeating: Psoriasis is not just a skin condition. As a chronic inflammatory disease, psoriasis requires proper treatment to help you avoid complications and related risks, like heart disease. In this episode, doctors and patients discuss the importance of finding a treatment plan that works, and why you shouldn’t settle.
S1E7: Importance of Proper Treatment
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (Vickie Wilkerson): It was just wonderful. It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.
Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: Many of the topics we’ve focused on in this podcast series have dealt with the difficulties of psoriasis: the itches, rashes and skin flakiness; the cost of medications; the insurance hurdles; and the stigma, shame and self-isolation that many people experience. Psoriasis is not curable, and some patients will have it for the rest of their lives. But newer medications are making it possible for a number of patients to experience clear skin for the first time in years.
Latella: Emotionally, it was like, the heaviest weight in the world was lifted from my shoulders.
Brandt: 79-year-old John Latella battled severe psoriasis symptoms — along with the stigma — for years.
Latella: You don’t know how great it is to be able to wear Bermuda shorts on a hot summer day. I used to go winter and summer with long sleeve shirts. And be out in the hot sun. I couldn’t take the long sleeve shirt off, because my arms were covered from my knuckles all the way up to my shoulders, with psoriasis. To wake up and not have to vacuum the floor every morning. Because you were so filled with scales.
I didn’t have staring anymore. I didn’t have people looking at me as if I’m different. Internally, emotionally, it lifts you. It makes you feel so much better about yourself. And you can move forward. You don’t have to be stagnant.
Brandt: In John’s case, getting on a biologic medication finally did the trick. Vickie Wilkerson of Shreveport, Louisiana, has seen similar results.
Wilkerson: I took pictures to where I could compare those pictures to what I was seeing on my skin, so that I can actually, you know, see that the medication was working. And once I really realized that it was working, I mean, it was just wonderful! It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.
Brandt: Still, experts like dermatologist Dr. Mona Gohara caution that the life-changing results that many patients experience are not necessarily permanent.
Gohara: I think one of the biggest misconceptions about psoriasis is that it is curable. It’s treatable, but it’s not curable. This is an inflammatory skin condition, that is genetic, and your immune system, one’s immune system is kind of wired to give them psoriasis. We can give them long periods of remission, and really change their life. But it’s never curable, it’s treatable.
Brandt: And if left un-treated, psoriasis can worsen in severity over time. Dr. Gohara also says it’s crucial that a treatment plan for psoriasis be just as comprehensive as for any other serious health condition.
Gohara: Can you imagine a different scenario where you have a cardiologist, and she advises her patient to only partially treat their cholesterol? That would never happen. Or a GI doctor who’s advising her patients to only treat their heartburn a little bit. That just wouldn’t happen. So if we translate that mentality into the skin as being an organ, it’s optimizing your skin’s health by treating the psoriasis you know, maximally and recommending to the patient, that that is something that is reflective of good skin health.
Brandt: Other experts, like Dr. Ahmad Shatil Amin, say there are still a lot of factors to consider, even if psoriasis symptoms begin to improve.
Amin: Psoriasis may be connected with other diseases like heart disease, stroke, and diabetes. So patients who have psoriasis are a little bit more risk for all these things. So it’s really, really important that a patient who has psoriasis, especially a patient who has moderate to severe psoriasis, it’s really important that they see their primary doctor once a year to do an annual thorough checkup, to get any appropriate blood work done. Because we want to be able to mitigate and check for all these other risk factors.
Brandt: As people continue to struggle with their psoriasis every day, many wonder if their quality of life can ever get better … ever return to something like it once was. Dermatologist Dr. Joel Gelfand believes the answer is ‘yes.’
Gelfand: What I explain to a lot of my patients is that what’s very normal for us as humans is to get used to our new normal, and we forget what life was like without psoriasis. And oftentimes, you don’t realize the accommodations we’re making in our life, you know, the clothing choices we make to try and cover our psoriasis, the time we take each day to manage it. The professional and social opportunities we don’t avail ourselves of because of this disease. And so we need to be mindful of that. And recognize that with the advances we have, for many of our patients, we can do better than they currently are if they’re still struggling with their disease.
Brandt: To wrap up this episode of Getting Clear on Psoriasis, I’ll leave the final word to Dr. Mona Gohara.
Gohara: I want everybody who’s listening to this podcast today who may be struggling with psoriasis, or who has struggled with psoriasis: Realize that science has come so far. And even in the early 2000s to now, psoriasis treatment has drastically changed. There are a tremendous amount of options, there are a tremendous amount of resources, there are a tremendous amount of experts, there is no reason to suffer and struggle with this condition.
Brandt: If you like what you heard in this episode, head over to Apple Podcasts and leave us a rating. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to: GettingClearPsoriasis@GHLF.org.
I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.
Episode 6
Coping with Stigma
Ever had anyone assume your psoriasis is contagious? Canceled plans because of psoriasis? Covered up your arms or legs to hide psoriasis patches? Felt like your loved ones really don’t understand what you’re going through? You’re not alone. In this episode, patients share what it’s like to deal with psoriasis stigma and experts offer advice on how to cope.
S1E6: Coping with Stigma
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (John Latella): I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.
Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: Psoriasis patients pay a hefty cost. And it’s not just because their medications are so expensive, or the inevitable battles in getting insurance companies to cover treatments. The price tag also includes the emotional cost in trying to convince others that psoriasis isn’t contagious – that it cannot be spread by person-to-person contact. Dermatologist Dr. Mona Gohara says unlike a lot of other diseases, psoriasis is on full display at all times.
Gohara: People see it, people see if you have psoriasis. They can’t see if you’ve had a heart attack. Or if you had whatever’s happening on the inside a kidney stone. They can see if you have psoriasis or bad acne or eczema. It probably becomes part of who you are.
Brandt: That is, of course, unless a patient takes conscious steps to cover it up. Many folks with psoriasis expend lots of time and energy doing just that — to avoid the stares in public, to prevent the shame and embarrassment of having to explain why their skin looks the way it does.
Wilkerson: Even trying to go to a grocery store, and to be able to pay for the stuff you get, and the cashiers are like trying to just pick the money out of your hand without really touching your hand.
Brandt: That’s 51-year-old Vickie Wilkerson, who’s lived with her psoriasis for 18 years.
Wilkerson: People walk way around or even on a different aisle when they see my skin when it was so bad with the psoriasis. I’ve definitely experienced the stigma that comes along with it because people do not understand what the psoriasis is about.
Brandt: Another psoriasis patient, Diane Talbert from Maryland, is 63. But she’s felt the psoriasis stigma from early childhood, including on her first day of school when she was just 5 years old.
Talbert: They told me I couldn’t come in because I was covered from head to toe in psoriasis. And they thought I was contagious. So I knew from that moment that I was different. I was quarantined for three months. No one had ever seen anyone with severe psoriasis.
Brandt: John Latella, a 79-year-old retiree from Connecticut, has had his own uphill battles against the stigma of psoriasis.
Latella: It made me feel anxious. It made me feel less than other people. I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.
We took the kids to the public pool in town. A lifeguard comes over and says, ‘You have to get out of the pool because that stuff is gonna spread all over everybody else.’ I said, ‘No, it’s not contagious.’
Brandt: John told the lifeguard that he believed he was protected by the ADA – the Americans with Disabilities Act. But that didn’t seem to matter to the lifeguard.
Latella: ‘I don’t care what the ADA says … get out of the pool.’ So I got thrown out of the pool. I went to the town manager after and I said, ‘This was the most disgusting thing that ever has happened to me. I hope it never happens to another person. You better educate your lifeguards. Because if you don’t, I’ll bring a lawsuit against you.’ And I never went back to a public pool. I installed pools in my own yard. I stayed in my own yard. I just didn’t want to be in front of people. I didn’t want to have my family suffer that embarrassment.
Brandt: John Latella’s experiences are borne out by the results of a recent study. Dermatologist Dr. Mark Lebwohl says it was an experiment conducted by a Canadian colleague.
Lebwohl: He had first year medical students paint tattoos on their elbows when they first started, and it was during short-sleeve weather.
Brandt: These were tattoos depicting areas of psoriasis on the students’ skin.
Lebwohl: And before they started the study, they thought that psoriasis was a trivial disease. And then they walked around with those tattoos for just a few days. And the impact on the way other people treated them was so striking that to them, it suddenly became a serious disease.
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Brandt: Catherine O’Leary is a clinical psychologist in the U.K. who also lives with psoriasis. She describes the impact of having psoriasis in terms of different layers.
O’Leary: So like on the top layer, there’s having to deal with the physical symptoms, so itching, soreness, flaking skin, having to put on your treatments, those sorts of physical things, which can be quite wearing, quite tiring, might affect your sleep and generally affect your well-being if you’re not feeling great. And then the next layer is coping with other people’s reactions. So whether that’s perceived or whether that’s real, trying to hide it trying to answer questions about your psoriasis, trying to manage it at work and that kind of thing. And then the other layer is the coping strategies. Some people might isolate themselves from people, so perhaps not go out, not socialize, and in order to cope with it, and then that kind of thing can lead to loneliness, to low mood, to frustration. People might not do things that make them feel happy. So not go to the beach, not go swimming, feel like they’re missing out. And then that can lead on then to low mood to anxiety. And of course, once you feel low, you lose interest in things, and you stop doing the things that make you happy. And it all becomes a little bit of a vicious cycle.
Brandt: Catherine says there are strategies that people can use to counteract the stigma, and minimize negative reactions from others who may not know all the facts.
O’Leary: Something that I would advise people to do is to kind of rehearse a little answer that you would give people so that if you’re out and about, and a stranger says, ‘What’s on your leg?’, you don’t suddenly go into a panic mode and feel stressed and distressed by that. So I would just say to people, ‘It’s psoriasis. It’s not contagious. You know, it’s an auto immune disorder’ So I give a little bit of an explanation. I might say something like, ‘You know, I’ve had treatment for it, you know, as I’m being looked after.’ So it’s kind of a little bit of reassurance for people. And then I try to take control of the conversation. So if I’ve had enough of talking about psoriasis, and the attention being on my skin, I might change the subject.
Brandt: Another dermatologist, Dr. Joel Gelfand, says self-isolation is typical of people living with psoriasis. And he says it’s crucial to have some type of outlet for the frustration the disease can bring.
Gelfand: Human interactions that we all take for granted can be really burdensome and traumatizing for people with psoriasis. Many people with psoriasis often feel alone with their disease, that they have no one really to talk to about it. And that can be very isolating as well. And so I really encourage my patients to make sure they’re speak to their close friends or romantic partners about the disease and what it entails, because no one should have the with without being understood and getting the empathy they deserve for a condition they’re trying to battle.
Brandt: Outwardly visible conditions like psoriasis can appear off-putting or even repulsive. And people like Vickie Wilkerson face the double burden of battling the disease while fighting the stigma.
Wilkerson: People don’t know. They just take these myths and run with them. And, it’s just more knowledge is needed for people to understand about psoriasis. It really is.
Music fades up under final narration
Brandt: In the next episode of Getting Clear on Psoriasis, we see how lives can be improved — both physically and emotionally — by finding the right psoriasis treatment.
Teaser Soundbite (Vickie Wilkerson): It was just wonderful. It was kind of like seeing the sunshine right after a heavy rainstorm. It’s kind of hard to describe, but it just was an over joyful feeling like okay, I finally found something that’s going to work for me.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.
Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.
Episode 5
Biologics: What to Expect
Moderate to severe cases of psoriasis are often treated with biologic medications, which are advanced therapies that target inflammation. They’re given as injections or infusions, and patients often have some common questions and concerns about costs, side effects, and more. In this episode, patients and experts discuss what to know about starting biologic therapy for psoriasis.
S1E5: Biologics: What to Expect
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (Tami Seretti): I had an auto injector. And they said you need to be injecting your thigh. That hurts! And I would sit there in the bathroom. And I would hold that auto-injector on my thigh. And I would be like, Okay, I’m going to do it at the count of 3. 1-2…. And I would be in there for an hour.
Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: As we heard in previous episodes, psoriasis can range from mild to severe, and there are treatment options for each type. Doctors try to match the severity of a patient’s condition with the proper treatment. Mild cases are usually treated with topical ointments and creams, but when psoriasis gets worse, dermatologists like Mona Gohara often turn to more complex medications known as biologics. They work on your immune system, tamping down activity to treat the root cause of psoriasis.
Gohara: Some of these medications can be pretty life-changing and miraculous. I’ve seen people go from body surface area of 80 percent to zero. And this can happen within months.
Brandt: But you can’t just run down to the local pharmacy to pick up your prescription. Biologics are administered either at an infusion site, or self-administered via injection by the patient. It’s more involved than swallowing a pill with a glass of water, and can take some getting used to. Self-injection can be very escary or overwhelming at first for patients like Tami Seretti.
Seretti: I had an auto injector and at the time, they were very new. And they said you need to inject in your thigh. That hurts! And I would sit there, I would sit in the bathroom and hold that auto-injector on my thigh. And I would be like, ‘Okay, I’m going to do it at the count of 3. 1… 2 … No, I’m not going to do it this time, I have to wait.’ And I would be in there for an hour just trying to push that button for 10 seconds of a needle that I was terrified of needles. Then I had to go from auto-injectors to syringes. And again, I was terrified. I can’t give myself a shot. Well, as it turns out, I sure can.
Brandt: And it’s not just a ‘one-and-done’ proposition. Biologics need to be taken on a regular, long-term basis. Here’s Dr. Gohara.
Gohara: These can be medications that are injected monthly, every three months, every six months, or sometimes every two weeks. And generally, this is a commitment most of the time for years, if not more. Sometimes it’s at least the minimum a year or two years, so if you really want to get the sustained effect, and sometimes for a lifetime.
Brandt: Another dermatologist, Dr. Joel Gelfand, says despite the apprehension many patients feel about sticking themselves with a needle, they’re relieved and delighted when their skin begins to clear up.
Gelfand: When patients are starting and maybe a little reluctant because they’re worried about doing injection therapy, you know, I think patience is really in order there. I mean, I always let my patients know we have other things to try if you really don’t want to go that that route, if it’s medically appropriate. If they have arthritis, for example, then I may be more pushy, that I think need to try a biologic. Most of my patients are very satisfied when they move on to a biologic therapy. And most of them will say to me, ‘I wish I started years earlier.’ People justifiably are worried about new therapies, or things that are by injection that sound scary to the patients. But in reality, these are really safe and highly effective therapies. And so for me, one of the biggest joys I have as a clinician is working with patients who are struggling with their chronic disease, finally getting them on therapy that’s helpful for them and then seeing the back and follow up and seeing that unique smile they have in their face when they’ve gotten to a point in their life where after years or decades of struggling psoriasis, you know, that skin is clear. It’s like a miracle.
Brandt: Prescriptions for biologics can only be filled by a specialty pharmacy. And they can be become a patient’s ally in their treatment journey.
Gelfand: Specialty pharmacies are often very engaged in helping channel the patient to a therapy that is covered by their insurance, as well as educating the patient about how to use the medication, do the injections, things of that nature.
Having a good relationship with a specialty pharmacist is really helpful to make sure that when things aren’t going exactly to plan, that there’s a way of managing things as well as maintaining access to therapy over time.
Brandt: Dr. Ahmad Shatil Amin says patients usually come into his clinic with a lot of questions about biologics, and whether they’re safe to take.
Amin: I think it does require a very, very careful discussion about how effective these medicines are going to be in clearing their psoriasis, and also some of the risks involved.
These medicines generally are very, very safe. They’ve been very, very thoroughly tested with large, large number of patients who have been in the clinical trials who have been followed over time. We have large studies that have followed patients in regular clinics across the United States, who have been on these medicines for a number of years, that really prove that these medicines overall are quite safe.
Brandt: Dr. Amin says biologics can make the body more prone to infections, so doctors want to know if a patient on a biologic starts to feel sick. This way, they can advise whether the patient should temporarily stop taking the medication while they recover, and when they can re-start it.
Amin: Because if they feel sick, while they’re on one of these medicines, if they have a cold fever, that’s not going away, we definitely want them to hold their medicine to let us know. We don’t want them to restart until they’ve gotten over whatever they have.
Brandt: Patients, understandably, also have concerns about side effects and cost. Here’s Dr. Gelfand again.
Gelfand: We have to go through that with the patient carefully so we understand what the individual’s side effects may be of any particular therapy available to them. Of course, we need to figure out if their insurance company will pay for these treatments, they’re often exorbitantly expensive, some of the treatments we use could cause tens of thousands of dollars per year. And the patient will be on these things long term. So access, insurance, approval, copayments, all things you need to sort out with a patient. And the next thing patients often wonders is, ‘How long do I need to be on this medication for?’ And similar to other chronic diseases, you know, like diabetes or hypertension, for example, they’re not curative. And so typically, most patients will be on these medications chronically for years or decades .
Brandt: People are amazed at how the body is able to pump out so many excess skin flakes with such factory-like efficiency. Here’s the basic explanation: With psoriasis, the immune system is over-active. It produces too many proteins called cytokines. Those cytokines send signals that cause the skin to regenerate much more quickly than usual, which leads to all the excess flakes. Biologic medications work to rein in these cytokines and block the over-production of skin cells. But biologic medications, potent though they are, don’t always deliver sustained results, so you may have some trial and error to find the right one for you. Vicky Wilkerson has tried various biologics for a few years now.
Wilkerson: I have been on five different biologics. You start the biologic, and they say that it takes six months to deem whether it fails or is treating your psoriasis. So the first biologic I was on, the six months came and went, and it had cleared my hands, which I was grateful for, but it had not cleared any other part of me. So then I had to switch and, and get on to a different biologic. And, you know luckily, the second biologic I was on, it worked well for me, it really did and worked well for like a year and a half, but then after that year and a half, it started failing. And so then I had to switch and go on to a different biologic. And it is just that same repeat all the way through – six months being on it, see if it works, or if it don’t work, then you have to switch and try something else.
Brandt: Dermatologist Dr. Mark Lebwohl says another problem is that some physicians are not well-versed in biologic medications, and don’t prescribe them as often as they should.
Lebwohl: And they’ll treat patients who are covered head to toe with creams and more creams and more creams. And patients sometimes come in carrying hundreds of creams that they were prescribed, when a cream simply is not the preferred treatment. Why did the doctors do that? There are several reasons. One of them is psoriasis may not be their area of interest, so they don’t bother to study the side effects and the beneficial effects of the new medicines.
Brandt: It’s important to find a dermatologist who is experienced using all the different psoriasis treatment options, so ask your doctor: Are you comfortable prescribing biologics for me?
Despite the many variables and hurdles of getting the right psoriasis treatment for you, Dr. Lebwohl feels optimistic about what the future holds.
Lebwohl: We’re at a period of time that’s actually starting to be called, you know, the golden age of psoriasis, because we can clear almost anyone, and we can, you know, we can do so in a way that is quite safe, and does not impose on the patient’s life, the way that our old treatments did.
Music fades up under final narration
Brandt: In the next episode of Getting Clear on Psoriasis, we talk about the challenges of dealing with the stigma of having psoriasis.
Teaser Soundbite (John Latella): I felt like a leper. I should be going around with a bell ringing, ‘Unclean! Unclean!’ Because in the early times, people with psoriasis were lumped in with lepers because they didn’t know the difference.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.
Episode 4
Is Your Treatment Working?
Thanks to medical advances, there are more types of effective treatment for psoriasis available than ever before. In this episode, experts and patients discuss the various treatment options, how to determine the right treatment plan for a given patient, and what to do if your psoriasis treatment isn’t working as well as you’d like.
S1E4: Is Your Treatment Working?
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (Withem-Voss): Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either a breakthrough, or it feels like it stopped working completely, just all of a sudden.
Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: I grew up working on a horse farm. Around 2001, I started to notice scaling around a small area on my right arm. I went to several doctors in Florida, where I was living at the time. They thought the bruises on my skin were caused by an allergy related to hay, straw, or grain. I mean, working on a horse farm…makes sense, right? The fourth doctor I saw finally got it right: what I had was psoriasis. My experience is the same for many others who bounce around from doctor to doctor, searching for one who can properly diagnose the condition, and treat it with the right medications. And for people like Tami Seretti, that means a lot of different prescriptions.
Seretti: I was never prescribed a biologic until I was diagnosed with psoriatic arthritis in 2008. Up until then, it was all topicals lotions and creams and shampoos and more lotions and more creams and steroids and non-steroids and stuff that I could use on my eyelids, and stuff I could use on my feet and my elbows, and then different stuff I could use on my scalp. So I had like a whole medicine cabinet full of prescriptions, and it would take an hour to get them all on.
Brandt: Dermatologist Dr. Mona Gohara describes what she calls a “therapeutic treatment ladder” for psoriasis.
Gohara: At the bottom of the therapeutic ladder are topical ointments and creams. These generally fall in the category of topical steroids. Steroids have different strengths, and so we offer different strengths based on body location to help decrease the inflammation. There are also vitamin D derivatives that we can use in a cream form, and different vitamin A derivatives, all of which in their cream or ointment form can be helpful in the treatment of psoriasis. So the first thing is topical medication.
Brandt: The next rung on the treatment ladder is phototherapy.
Gohara: When somebody has psoriasis, it’s a very effective way to treat it is to put them in a light box in our offices. This is a controlled setting of ultraviolet light therapy and narrow band of ultraviolet light therapy to help to reduce the inflammation and actually often put people in remission for periods of time.
Brandt: Then comes the heavy artillery – the targeted medications, which include oral pills and injectable biologics.
Gohara: And they’re kind of like the tippy-top of the psoriatic treatment ladder. Psoriasis is an immune-mediated condition that’s coming from our immune system and the interaction of different players within our immune system. And these biologics actually work at the level of the immune system to block those interactions. These can be incredibly effective and can really transform somebody’s life. These medications can be a game changer.
Brandt: But it’s important to have realistic expectations about timing. As dermatologist Dr. Joel Gelfand says, these medications don’t produce results right away.
Gelfand: Most of our treatments can take some time to work, especially seeing a full benefit from treatment. So patients should expect that we’ll need to wait about four to eight weeks to have a starting response, but sometimes as much as four to six months to see an optimal response to treatment.
Brandt: And the waiting game can be discouraging, as psoriasis patient Vickie Wilkerson discovered.
Wilkerson: I didn’t know anything about biologics at the time. I really didn’t know anything about the drugs, and I’m like, oh, this is gonna work. I mean, it’s just gonna work, it’s gonna clear me and I’m gonna be good to go. And it made it harder on me when it failed, when it did not work. And it sent me on, like a little downward spiral.
Brandt: Melissa Withem-Voss is a professional chef from Waukegan, Illinois. She says most patients try to be upbeat about a new medication, and want to believe it’s going to help them.
Withem-Voss: You want to give it as much positive vibes as you can. But at the same token, it’s kind of stuck in the back of your head of, ‘when is this gonna quit?’ And you usually tend to plan a plan B with your physicians. Like, okay, once this drug doesn’t do what it’s doing now, what are we going to do then? So you sort of have like, like an A and a B plan.
Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either breakthrough, or it feels like it stopped working completely, just all of a sudden.
Brandt: That’s usually when it’s time to change things up, says dermatologist Dr. Mark Lebwohl.
Lebwohl: If someone has extensive psoriasis, meaning more than 10%, body surface area, topical therapies start to become impractical. If they have psoriasis, that simply is refractory to topical therapies, or involves area of the body that that are problematic, such as the hands and feet, where the psoriasis can be very painful, can interfere with day to day, functions of life. Or if it involves the face, for example, or severely involves a scalp. Those are areas where I would say, you know, we’ve got to get you in control, got to use treatments that work quickly. And this makes you a candidate for systemic therapy and for biologic therapy.
Brandt: Dr. Lebwohl says that psoriasis can often lead to psoriatic arthritis. And that’s something your doctor needs to know about.
Lebwohl: Many of them, by the way, won’t even tell you about joint pains. And that’s a critical question which I asked every patient when I first see them, because if they have psoriatic arthritis, it has a big impact on the treatment I’m going to give them.
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Brandt: My psoriasis started on my right arm and stayed there for years. But then I started noticing extreme flaking on my scalp — and it eventually showed up under my fingernails. So that’s another tricky aspect of psoriasis — it doesn’t always stay in one place. It can be a moving target, showing up in sensitive places like under the arms or in the genital area. And as we heard from Dr. Joel Gelfand, patients may see positive results on a certain medication, but their quality of life can continue to suffer.
Gelfand: Some patients may have, say, a 70 percent reduction in their body surface area, and flaking of psoriasis. And they may be delighted with that. And they’re happy and they feel like they have no more symptoms of psoriasis that are bothersome, they feel like they go about living a normal life, well, then we could probably stay on that course of treatment. But if the patient feels like they’re still bothered by their disease, they still think about it a lot, they’re still embarrassed by it or they have to alter their activities, they don’t want to go swimming or get their hair cut, then we should think about using something that’s going to be more effective with achieving an optimal response.
Brandt: Dr. Gelfand says one of the best things a patient can do for themselves is be proactive. Talk to the doctor. Let them know what’s going on with your psoriasis symptoms, the good and the bad.
Gelfand: I think it’s really important for the patients to advocate for themselves and make sure that clinicians are aware of what’s going on with their physical and emotional health. Because all of us are here doing this work because we want to help people live their best lives and healthiest lives. And so if people feel like they’re struggling emotionally related to their skin disease, we need to know that information. It’s a vital sign for us. And the first thing we’re going to try to do is figure out what do I need to adjust the treatment to get your skin clearer to help with some of the burdens that you’re dealing with?
Brandt: Treating psoriasis with any degree of success involves a partnership between patients and their physicians. That partnership can only work if there’s honest and open communication about a patient’s condition, both the physical and the emotional. Tami Seretti says it’s easy to let frustration and even despair take over, but she’s committed to staying optimistic.
Seretti: Don’t get discouraged. Don’t lose hope, because they’re coming out with more things every day. And they’re learning new things every day. So there’s always going to be something to switch it out for. Unfortunately, it can take a lot of time. It’s worth it in the end.
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Brandt: In the next episode of Getting Clear on Psoriasis, we talk about what happens once your doctor prescribes a biologic to treat your psoriasis.
Teaser Soundbite (Tami Seretti): I had an auto injector. And they said you need to be injecting your thigh. That hurts! And I would sit there in the bathroom. And I would hold that auto-injector on my thigh. And I would be like, Okay, I’m going to do it at the count of 3. 1-2…. And I would be in there for an hour.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.
Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
Episode 3
Building Your Psoriasis Care Team
Psoriasis is considered a skin condition, but it’s not just dermatologists who treat people living with psoriasis. A personalized care team depends on how psoriasis impacts each patient. You may need mental health care or specialists for comorbidities like heart disease and psoriatic arthritis. Pharmacists can also play a big role in helping patients manage medication. In this episode, patients and experts discuss how to build the right care team for you.
S1E3: Your Psoriasis Care Team
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (Tami Seretti): I had to do a lot of legwork on my own to get to that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.
David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: So far, we’ve talked about what psoriasis is, and how it can affect daily life. But there’s a bigger picture. 5 to 30 percent of psoriasis patients eventually develop psoriatic arthritis. This is a form of arthritis that affects some people with psoriasis, and can cause joint pain, stiffness and swelling. What’s more, psoriasis can occur with related conditions, or comorbidities — things like diabetes or cardiovascular disease. And a patient’s mental health may begin to suffer as well. So psoriasis patients often need a coordinated team of medical professionals.
Withem-Voss: My rheumatologist does my arthritis. My dermatologist does my skin and everything related to it. And my PCP handles most of my comorbidities.
Brandt: Melissa Withem-Voss is a professional chef who lives in Waukegan, Illinois. She’s lived with psoriasis and several related conditions for a number of years.
Withem-Voss: That is one thing that is so very common with psoriasis, because things tend to go hand in hand with it. So for instance, I’m a diabetic. And that’s kind of common. It’s usually more frequent for people to be overweight with psoriasis because we’re not as active in as many ways as we once were. So there tends to be kind of a melting pot of different physicians being involved.
Brandt: And it’s crucial that those physicians — the ones in the “melting pot” — are communicating with each other about a patient’s treatment plan. It’s also important that they make the patient feel heard about what they’re going through. Tami Seretti discovered that finding the right doctors sometimes involves trial and error.
Seretti: I had to do a lot of legwork on my own to get that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.
Brandt: A good team of doctors will work together to come up with the best care plan. Dermatologist Dr. Mona Gohara says that in her practice, there’s a range of expertise in different areas. And this comes into play especially for more severe cases.
Gohara: I’m in a really big group of dermatologists. And even amongst us, there’s a broad range of what people are comfortable doing. So, you may come into the same office and get different doctors with different levels of comfort and expertise. So it’s not necessarily that somebody has to be like a psoriasis expert, because psoriasis is a pretty common skin condition that most dermatologists are very proficient in treating. The bigger discrepancy comes from whether somebody is comfortable prescribing a biologic.
Brandt: Biologics, you may remember, are targeted medications that can be used for moderate to severe psoriasis as well as psoriatic arthritis. Dr. Gohara says it’s vital that every member of a patient’s care team is communicating with one another.
Gohara: In the case of somebody who has psoriatic arthritis, oftentimes he or she is seeing a rheumatologist as well. And I’m not operating in a vacuum. I’m speaking with the rheumatologist to understand their recommendations so we can come together and identify what is going to best treat both arthritis and skin because there are some biologics that are really great for skin but not so great for arthritis and there are some biologics that are really great for arthritis, not so great for skin, then there are some that are both. And so in those situations, we obviously want to converge on the ones that are good for both.
And then I always recommend that they are seeing their primary doctor for regular cholesterol checks. And then the primary doctor will appropriately recommend seeing a cardiologist if she or he thinks that they have other cardiovascular risk factors that warrant additional treatment.
You should also let the doctor know to what extent this is affecting your life? Is it just a spot that’s annoying on your skin? Or are you not going out? Are you not raising your hand? Are you’re not applying for the job? Are you not dating? That’s something that’s important.
Brandt: Speaking up to a doctor can help a patient understand whether they may be experiencing depression as a result of their psoriasis. Catherine O’Leary is a clinical psychologist in the U.K. She also has psoriasis.
O’Leary: There are very many people with psoriasis who are very happy, very well-functioning, and leading great lives.
The thing to remember is that depression and anxiety are both very, very common, and especially so in people with psoriasis, because it’s a difficult condition to live with. And the other thing to remember that it’s not their fault, it’s not because they’re weak, it’s a really hard condition to live with. It’s not because they’re doing something wrong. It’s because they’ve got psoriasis, and it’s a challenge is really, really hard. But the depression adds to it, and just makes it all that much harder. And I think once you get into the vicious spiral, it’s quite hard to get yourself out of it. But the thing to know is that depression is very treatable. It’s treatable with anti-depressants, and it’s also treatable with talking therapies. So once people identify that they’re feeling depressed, that they’re feeling anxious, the important thing is to go and see their medical specialist and ask for whatever support is available in their area.
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Brandt: There’s one other key member of a patient’s care team, and that’s the pharmacist. Some patients with more serious cases may need advanced therapies, like injectable biologics or targeted oral medications. And these prescriptions cannot be filled at a regular corner pharmacy.
Amin: After the medication is approved, patients have to interact with a specialty pharmacy to arrange for shipment of the medicine to their home. And they often have to do that on a regular basis.
Brandt: That’s Dr. Ahmad Shatil Amin, who’s been a dermatologist for nine years.
Amin: And these specialty pharmacies are you know, I think they’re excellent. They’re staffed by very, very well-trained pharmacists who really understand these medicines very well, and they’re really our partners, and helping us give these medicines safely to patients and to educate our patients about the medicine and the dosing and the frequency.
Brandt: Renee Baiano knows this first-hand. She now works as Clinical Program Manager at AllianceRx Walgreens Prime, and she also spent time as a staff pharmacist at Walgreen’s Specialty Pharmacy. She says there are several different reasons a drug would be considered a specialty medication versus one you can get at regular retail pharmacy.
Baiano: First of all, specialty medications are typically FDA-approved to treat complex medical conditions and rare diseases which require additional monitoring, and extra patient education. Specialty medications often require special storage, such as refrigeration or even frozen medications. They often require certain preparations such as sending certain supplies to the patient. And they also require special handling sometimes, so the specialty pharmacy is well equipped to get the patient’s medication out properly.
Brandt: And she says specialty medications can be very expensive. Specialty pharmacies can work with patients and their providers to help facilitate insurance coverage and locate financial assistance. Renee says specialty pharmacists are also trained to maintain regular contact with the patient.
Baiano: Your pharmacist will be checking in with you regularly to ask you certain questions to make sure you are doing well on therapy. So they may be asking if you’re having any side effects so that you can discuss what to do about those. They may be asking how you’re doing with taking your medication as prescribed, so that they could help guide you through ways to make sure you’re taking your medication properly. And they may be checking in to see how you’re doing in general in therapy to make sure that the medication is working effectively for you.
Brandt: And Renee says the specialty pharmacist should stay on top of things to help people stick with their treatment plans.
Baiano: Another concern that we see from a lot of patients starting systemic therapies is that when they start to feel better, they think they can start skipping or holding doses. So it’s really important that the pharmacist watches the patient to make sure they’re not late to refill their medication or not expressing that they’re missing doses, so that we can educate them on the importance of taking their medication as prescribed to avoid things like worsening symptoms or other complications.
Brandt: Psoriasis patient Tami Seretti says most of her medications come through a specialty pharmacy. And she appreciates that they do much more than just fill prescriptions.
Seretti: They do make a pharmacist available for everything, for any questions that you have, or any side effects that you have or anything like that. And also the companies that manufacture the biologics and the medications, also have nurses available and help lines and support lines and support programs. For as long as you’re taking the medicine, they’ll give you 24-hour nurse lines, they’ll give you 24-hour pharmacy lines. And it’s important to know, I’ve always asked a pharmacist, my dermatologist, we’ve always discussed the possible side effects.
Brandt: So, we’ve looked at the importance of putting together a solid care team to manage your psoriasis. And the critical role specialty pharmacies play in the equation. But even with the most well-oiled care team , and the most competent specialty pharmacy, psoriasis patients still face an uphill battle to get insurance companies to cover their treatments. Dermatologist Dr. Mark Lebwohl shares that frustration.
Lebwohl: Once a patient is prescribed a biologic, the work for the physician does not even come close to ending there. It’s a fight that goes on with your insurance company, because the insurance company, most of the time does not want to give the patient the drug. And if and when we fight, the fight usually takes at least an hour. It takes about two weeks to get this done. The patient is then prescribed the medication.
Brandt: At least, that’s how it works, some of the time. But insurance obstacles can vary widely from case to case when it comes to getting costly medications covered. Some people have to fight for weeks or months, and still get denied. Still, Tami Seretti says not to be put off by all the hoops the insurance companies make you jump through.
Seretti: Learn your insurance companies, because if you have to take a specialty medicine, it can be very discouraging. You’re going to go through prior authorizations. And you’re going to go through step therapy, and you’re going to go through everything in the world because stuff is expensive, and nobody really wants to pay for it. Don’t give up, your doctor will help you. Organizations will help you. There are people out there that will help you get medication that you need and help you cut through a red tape.
Music fades up under final narration
Brandt: In the next episode of Getting Clear on Psoriasis, we explore what treatment options are available for psoriasis, and how to tell if you’re getting the treatment you need.
Teaser Soundbite (Withem-Voss): Most medications for psoriasis, once you start them, whether they be topical or biologic, they will work for an undetermined amount of time, it just seems to be whatever your body accepts it is. And then suddenly, you’ll start noticing either a breakthrough, or it feels like it stopped working completely, just all of a sudden.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.
Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.
Episode 2
Living with Psoriasis
Psoriasis affects each person differently, but it can have a significant impact. Psoriasis can be itchy, rashy, and painful. It can spread and flare unpredictably. It can be linked with anxiety and depression, and affect your relationships and work. Even though it can take a big toll on your quality of life — you don’t have to settle or live this way forever. In this episode patients and doctors discuss all the ways psoriasis can impact daily life.
S1E2: Living with Psoriasis
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser Soundbite (Vickie Wilkerson): It took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible.
David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to offer tools and resources to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: Back in the early 60s, there was an advertising campaign for a medicated shampoo designed to relieve something called “the heartbreak of psoriasis.” That campaign was a little over the top to say the least, and it generated a fair amount of ridicule. But despite the melodramatic Madison Avenue spin, I think what those ads were playing on was the sense of shame that goes along with having a visibly unattractive skin condition.
Withem-Voss: I was in line at a zoo — a local zoo here in Chicago — and I had a lady turned around and looked at me, and was offended by my legs being affected, and actually asked if my sores were something that were contagious, and why was I not covered up?
Brandt: That’s Melissa Withem-Voss from Waukegen, Illinois.
Withem-Voss: I very calmly told her that I had psoriasis. I told her that there was no more reason for me to be covered on a 95-degree day than her. I explained to her that it was a condition that was non-contagious. But I could still see in her face that she didn’t believe me. She had absolutely no qualms with stepping away from me at that point. And this was way before COVID and things, so there was no immediate knowledge of you know, ‘Ew get away.’
Brandt: I think one of the most common themes among those of us who have psoriasis is that we want to do anything we can to cover it up. And let’s face it: Appearance-wise, psoriasis can be jarring. It can cause people to recoil, thinking it has to be contagious — something to be avoided at all costs. And people who have that reaction often are not very receptive to learning what psoriasis actually is. But for people who live with the condition, being judged — like Melissa was — can be frustrating, unnerving, even traumatizing.
Withem-Voss: People need to be aware that it’s not uncommon to have darker thoughts, along with psoriasis, because you feel like you hit a rock bottom. And I believe that most psoriasis sufferers feel that way that you feel you’ve come to a point where you can’t really see out or up. And it’s usually around the time frame, that you’ve been diagnosed for a little bit. And you’ve tried a couple things and maybe failed them, you start to feel kind of a depression of, okay, where do I go from here? What’s next? And then you start looking at it, and you’re like, ‘Is there anything left is, am I doomed? Is this it?’
Brandt: Melissa says when people reach that point, it’s time to seek help: from a health care provider, a support group, a counselor.
Withem-Voss: It’s not a journey for the faint of heart. You have to really look after yourself, and all the different ways.
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Brandt: I’ve been very fortunate that my psoriasis is relatively mild. It’s mostly visible on my hands. I’m the catering director at a large hotel in Los Angeles, so I’m very conscious of needing to stay after my psoriasis every day. But for people with more severe cases, psoriasis flareups can cause painful red rashes on the skin. The skin often cracks and bleeds in different areas of the body. 79-year-old John Latella knows this all too well.
Latella: It’s been difficult at times. I’ve suffered with depression that I had to take myself out of. It was painful at times. It was bloody at times. It was just sometimes you just say I give up. But then you keep going.
There would be times when the pain of the burn so much that I’d be in tears. You know, you get at the point, you say to yourself, ‘I just can’t take it anymore.’ Then you have to relax. You have to just say I have to move forward. My children all knew what I was going through. They knew that I just couldn’t do some things. But I never stopped doing the things that I wanted to do. Even though it might have been very painful. I added on a room to our house, up and down a ladder. At the end of the day, it was very painful. I knew I had to do things I had to prove to myself.
Brandt: So what’s actually happening here? What’s causing all the rashes, the itching, and the pain for so many patients like John? We talked to Dr. Ahmad Shatil Amin, who’s an Assistant Professor at Northwestern University and a practicing dermatologist for nine years.
Amin: Psoriasis produces these thick plaques on the skin, and basically what you have is a lot of sort of dead skin kind of piling up on one another. And so that produces that kind of scale. So oftentimes, patients who have psoriasis leave a trail of scale behind. Their bedrooms, their offices are often covered in scale, their desks are covered in scale, whenever they take off their shirt, there’s like a plume of scale everywhere, when they have it on their scalp, they have scaling on their shoulders. A lot of patients with psoriasis will describe that their plaques are quite painful, especially patients who have psoriasis on their hands and feet. You’ll hear stories about how a young person with psoriasis has completely stopped dating, because they’re just afraid to be close to someone, or they’re afraid to experience physical intimacy with anyone because of their plaques. You will hear stories about how patients have stopped going to the gym, because they don’t want to be on a treadmill in their shorts and have someone else stare at their psoriasis on their legs.
Brandt: 51-year-old Vickie Wilkerson from Louisiana says self-consciousness about her psoriasis was devastating.
Wilkerson: It just took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible. To someone that was, you know, an outdoor-type person to hiding in my house and not really wanting to go outside. You know, I didn’t want anybody to see what I look like.
Brandt: Tami Seretti, who lives near Pittsburgh, describes her own self-isolation.
Seretti: I did lose some friends by canceling plans and being dubbed as unreliable. When really it was me not being completely honest, because I just didn’t want to say I can’t put my underwear on. I can’t, I can’t put my bra on. I can’t wear my pants. That’s why I’m canceling. So I would just say, you know, I’m not feeling well, or something came up. I think so many things came up that I did lose some of my friends along the way.
Brandt: But Tami also recalls that one of the most visible side effects of her psoriasis ultimately helped her to connect with others on a positive level.
Seretti: I went 20 years without knowing one person that had psoriasis and then finally, losing my hair and people were like, what happened to your hair? Well, it’s psoriasis. And people that I’ve known since middle school were like, ‘You know, I have that too. I’ve been hiding it all my life.’ And what a waste. You know, we could have all supported each other through this, but none of us knew. Because we were all hiding it.
Brandt: And Vickie Wilkerson says that, after 18 years, she’s grown more confident using a direct approach with people, instead of always hiding in the shadows.
Wilkerson: Now if somebody comments and they say something, I just flat tell them, ‘Look, it’s psoriasis. And first and foremost, it’s not contagious, you cannot catch it. It’s hereditary on my part.’ So I just come and go into telling them and trying to educate them about psoriasis. So that maybe somewhere down the line, if they see it again, they’re not going to give the other person the same reaction they gave to me.
Brandt: So Vickie Wilkerson has developed a new self-confidence in educating people about psoriasis. And Tami Seretti found support from people who she may not have thought would be supportive. Another psoriasis patient we spoke to is Catherine O’Leary. She also happens to be a clinical psychologist in the UK, and works with people who live with various chronic illnesses. For her, it’s also important to seek out the things that bring comfort.
O’Leary: When you’re struggling with psoriasis, the things that you do to look after yourself often go out the window. As psychologists, we talk about soothing activities are the things that soothe you, they’re the first things to go when you’re in distress, when your psoriasis is bad. So make sure that you practice self-care things and that and that might be you know, walk on the beach, or meditating, it might be curling up with a good book, but the things that just make you feel calm, make you feel relaxed, and make you feel soothed.
Brandt: Dr. Mona Gohara is a dermatologist from New Haven, Connecticut. She says some patients feel judged because of their psoriasis, and may be reluctant to tell their doctor about related conditions they’re experiencing.
Gohara: It’s important to be transparent, because it really can make a difference in treatment. So I think; one, talking about what other symptoms you’re having: arthritis, is there a cardiovascular history; two, talking about how this is affecting your life; and three, to be just honest. It doesn’t faze me what people tell me in the office. I’m not judging you. I just wanna know factual information, so we can come up with the safest and best treatment plan.
Music fades up under final narration
Brandt: Straight talk with your doctor is so important. It’s also crucial that psoriasis patients feel comfortable with the medical professionals they work with to address their condition. And that’s what we’ll focus on in the next episode of ‘Getting Clear on Psoriasis’ – building the right care team to treat your psoriasis.
Teaser Soundbite (Tami Seretti): I had to do a lot of legwork on my own to get that team. I’ve been through a lot of doctors, a lot of dermatologists, a lot of specialists, a lot of people that were like you know, it’s all in your head. And you gotta let that go. You got to you got to drop that and find somebody who knows that it’s not in your head.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.
Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
Episode 1
You’ve Been Diagnosed with Psoriasis: Now What?
It can be overwhelming to learn you have psoriasis — but understanding what it is (and isn’t), how it’s treated, and what to expect along the way can help. In this episode, patients share what they wish they knew after they were diagnosed — and doctors share key things every psoriasis patient should know and do.
S1E1: You've Been Diagnosed with Psoriasis: Now What?
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
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Teaser soundbite (Tami Seretti): It’s not your fault. You didn’t do anything wrong, you didn’t ask for this. It’s not because you didn’t bathe. It’s not because you didn’t use the right soap. It’s not because you used the wrong shampoo. It’s not because you ate the wrong food. You have an autoimmune disease.
David Brandt: Hello, and welcome to Getting Clear on Psoriasis. I’m your host, David Brandt, and I’ve been living with psoriasis for more than 30 years. In this podcast series, we bring you stories about different people’s experiences with psoriasis, and hear from medical professionals who treat the condition every day. Our goal is to share information to help you manage your psoriasis, seek out the best treatment options, and live a more full and productive life.
Disclaimer: This podcast is for general information purposes only and should not be substituted for medical advice. Please consult your own medical professionals with any questions regarding a medical condition, advice, diagnosis, or treatment.
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Brandt: So I’ll give psoriasis one thing – it’s persistent. It first showed up as a documented medical condition around 400 BC. Psoriasis affects around 8 million people in the US … 125 million people worldwide. And yet, a surprising number of folks still view it as some sort of skin rash, something you treat by rubbing a cream onto your skin for a few days.
But what most people don’t understand – unless, of course, they have psoriasis – is that it can be a lifelong condition that often causes a lot of misery – both physically and emotionally. Psoriasis is hereditary. It can lie dormant for years and then awaken out of the blue, producing scaly patches or rashes pretty much anywhere on your body.
Seretti: I was at a Christmas party and my scalp was itchy. I felt a big scaly patch on the back of my scalp.
Brandt: That’s 54-year-old Tami Seretti. She was diagnosed with psoriasis in 1996, and with psoriatic arthritis in 2008.
Seretti: Because it was Christmastime, I couldn’t get into a doctor. And by the time I could see a doctor, between Christmas and New Year’s, like 75% of my scalp was covered with this, and he diagnosed it as psoriasis, which I had never even heard of before. I had no idea what it was. And we kind of went from there.
Brandt: Currently, there are three main ways to treat psoriasis. For milder cases, there are a number of different topical ointments and creams. Another method is called photo-therapy. This is usually done in a dermatologist’s office using a lightbox — sort of like a tanning bed — to slow down the excess growth of skin cells. Then there are targeted medications — administered orally or through injection — that go after the root cause of psoriasis: an overactive immune system.
Seretti: I spent years just doing topicals and everything that he started, and that was in December of 1996. But he didn’t tell me that when all of those scales started coming out, that my hair would come out with it because they were all stuck together. I had short hair, but I went from this short hair to what looked like almost like dreadlocks because it all tangled together.
Brandt: Tami’s doctor had started her on a peanut oil steroid lotion.
Seretti: And I couldn’t get the peanut oil out. My hair kept coming with it. It was really a devastating experience.
Brandt: After developing psoriatic arthritis, Tami started seeing a rheumatologist, who put her on steroids and methotrexate.
Seretti: And that didn’t work. So she switched me over to biologics. My first biologic didn’t work. My second one, I was on it for a long time thinking that it worked. It didn’t work for my psoriasis. But I was thinking that it was helping my joints. But it really wasn’t, because I ended up with a lot of joint damage. I just didn’t realize that it wasn’t working as well as I thought it was. I had to have surgery and had to go off it for two weeks. And when I started again, it didn’t work at all, which is very common.
Brandt: Tami says after all that, it was tempting to blame herself for having psoriasis in the first place. But she’s come to reject that attitude.
Seretti: Number one, it’s not your fault. You didn’t do anything wrong, you didn’t ask for this. It’s not because you didn’t bathe. It’s not because you didn’t use the right soap. It’s not because you used the wrong shampoo. It’s not because you ate the wrong food. You have an autoimmune disease. The soaps you use, the lotions, the foods you eat can have an impact. But it was always there.
Brandt: Dr. Ahmad Shatil Amin shares Tami Seretti’s perspective. He’s an Assistant Professor at Northwestern University, and has been a practicing dermatologist for 9 years.
Amin: One of the first questions that someone asks when they first get diagnosed with psoriasis, and it first appears on their skin is, you know, they want to know, why the heck did this show up, they’ve never had psoriasis, they’ve lived two decades of their life without psoriasis, and all of a sudden that shows up. And so their main question is, why do I have psoriasis? Is it something that I did? Is it something in my diet? And so, the first thing to explain to patients really is that although we don’t understand all the genes that cause psoriasis, it really is a genetic condition. And so you’re either born with these genes, or you inherit these genes from some of your family members. And oftentimes, these genes are very silent and dormant, but they can activate and turn on and cause psoriasis at any point in life. So I try to make the emphasis that it’s nothing that you did, a lot of this was probably out of your control, and your psoriasis kind of decided to show up whenever it wanted to show up.
Brandt: Dr. Amin also tries to explain to his patients that psoriasis is generally a condition that’s going to be with them for some time.
Amin: Oftentimes for most patients, psoriasis is a chronic disease. So in other words, I can’t give you a magic pill and make it go away and make it stay away forever. If you have psoriasis, for most patients, psoriasis kind of sticks with you for several years, maybe for the rest of your life. It sometimes does have a waxing and waning nature. In other words, like it may not be as bad that it is today, a month from now or three months from now. So it might get a little better with time and it might worsen again with time so sometimes the condition can ebb and flow.
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Brandt: 51-year-old Vickie Wilkerson lives in Shreveport, Louisiana. She was first diagnosed with psoriasis about 18 years ago. In Vicky’s experience, some doctors were better than others at communicating with her about her psoriasis.
Wilkerson: I wish I had been more informed. I wish the doctors gave me information, or told me where I can find information, or be more informed because I didn’t know anything. And what little bit I did learn was of my own research online. So had no idea, I really had no idea. I did not know how bad the psoriasis could get. I did not know that there were other conditions that could come along with having the psoriasis. I was just in the dark.
Brandt: Vicky says as her psoriasis worsened, so did her emotional state. And it eventually began to affect her marriage.
Wilkerson: After I was on my first biologic, I put so much faith into it, that it was gonna work, it was gonna clear it up. And, and when it didn’t six months later, and I had to stop using that biologic. It really kind of threw me into a tailspin. I got really depressed. Even so much so that I’d only been married about a year at that point, I told my husband, I would let him out, I would give him a divorce. And, you know, and let him walk away, because I didn’t know how bad it was going to get. I didn’t know how much it was going to affect, you know, affect my life going forward. And lucky for me, he is great man. And he stood by me, and he’s like, I’m not letting you go.
Brandt: Many couples aren’t as lucky as Vicky and her husband, and relationships sometimes end due to one person’s battle with psoriasis, and the other’s inability to cope with it.
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Brandt: So far, we’ve been talking about psoriasis mainly as a skin disease. But according to Dr. Mona Gohara, Associate Professor of Dermatology at Yale School of Medicine, it’s a more complex condition.
Gohara: It also can be associated with arthritis of the small joints or lower back. And we know now that it can be associated with increased risk of coronary artery disease, elevated cholesterol, and even elevated blood sugars are what we call it the metabolic syndrome. Gone are the days when somebody comes in the office and we just give them a cream and have them walk out the door when they have psoriasis. It really is now counseling them about not only what to do with their skin, but what they can do and what they should be looking out for in terms of arthritis prevention or treatment, and also being in tune of their cardiovascular risk factors and getting cardiovascular exams.
Brandt: And many doctors have come to realize the importance of validating their patients’ experiences and feelings. Dr. Joel Gelfand is a Professor of Dermatology and Epidemiology at the University of Pennsylvania.
Gelfand: It’s really important for the clinician to understand the patient’s perspective, how the disease is impacting them personally, in terms of the physical symptoms they have, is it disrupting their sleep, is the effects of psoriasis causing staining of their clothes, clothing, or their bedsheets, and things of that nature. Are they itching all night long? As well as the emotional impacts of psoriasis. Does it affect their personal relationships, their intimate relationships, do they feel anxious or depressed about their disease, does it affect their ability to work? By having an insight into the degree of physical and emotional symptoms people have related to psoriasis, that gives us a sense of how aggressive we need to be in managing the disease.
Brandt: And on the patient side, Tami Seretti has begun to rely more and more on her own inner strength to manage her psoriasis.
Seretti: You’re going to find your new self and be so much stronger for it because you’re already stronger than you think. You have it. You got out of bed this morning, you reached out to somebody, you’re already stronger than you think you’re already on your way. And hiding it doesn’t hide it at all. It just makes you look like a flake. Instead of your skin looking like a flake.
Brandt: 63-year-old Diane Talbert from Waldorf, Maryland agrees. She’s become very proactive about her psoriasis, making yearly trips to Capitol Hill to advocate for people like herself, and she’s also spoken before the FDA.
Talbert: You need to go advocate for yourself. So that’s something else. I would stop the hiding, definitely. And look for a great doctor, you know, and, and I guess, do more research because I didn’t know, I didn’t know we had great doctors out there at all.
Brandt: Dr. Joel Gelfand encourages all his patients to stay positive, and be their own best advocates.
Gelfand: I feel like people with psoriasis have a unique type of courage. It takes a lot of courage to face our world with a skin disease like psoriasis. And it takes a lot of persistence and effort to get to the right treatment plan that’s helpful for the patient. With that in mind, I really encourage my patients to stick to it. That courage, that bravery in the face of frustration and setbacks, pushing forward and, and getting the answers you need, trying treatments to see which one is going to work for you properly. These are the secrets of success for my patients.
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Brandt: In the next episode of ‘Getting Clear on Psoriasis,’ we talk about the challenges of navigating daily life with psoriasis.
Teaser Soundbite (Vickie Wilkerson): It took me from a very confident person, because I was very confident in who I was at the time, down to someone who was fearful, ashamed. Definitely ashamed because I mean, my skin just looked horrible.
Brandt: That’s coming up on Getting Clear on Psoriasis. If you like what you heard, head over to Apple Podcasts and leave a 5-star rating and write a positive review. It’ll help spread the word to more people who might be in need of support. And if you know of someone living with psoriasis, be sure to tell them about this podcast. As always, we welcome your feedback, so send us an email to Psoriasis@GHLF.org.
Until next time, I’m David Brandt. Thanks so much for listening.
Sponsor Credit: This podcast is made possible with support from Walgreens and AllianceRx Walgreens Prime, sponsors of the Global Healthy Living Foundation.
“Be inspired, supported, and empowered. This is the Global Healthy Living Podcast Network.”
BEHIND THE MIC
Getting Clear on Psoriasis features host David Brandt, who has been living with psoriasis for more than 30 years, and interviews with top psoriasis experts and patient advocates.
David Brandt
Host
David Brandt has lived with psoriasis for more than 30 years. He is the Operations Manager at the Global Healthy Living Foundation as well as the Director of Catering and Conference Services at a Four Seasons hotel. He currently lives with his partner in Los Angeles.
Mona Gohara, MD
Dermatologist
Dr. Gohara is an Associate Clinical Professor at the Yale School of Medicine and also sees patients in private practice. She is an active member of the American Academy of Dermatology and the American Society for Dermatologic Surgery, where she chairs the DEI work group. She is the President-Elect of the Women’s Dermatologic Society. Dr. Gohara is on the advisory board of Women’s Health and Shape and is a medical resource for many media outlets.
Joel Gelfand, MD, MSCE, FAAD
Dermatologist and Epidemiologist
Dr. Gelfand is the Director of the Psoriasis and Phototherapy Treatment Center at Penn Medicine, where he is also the James J Leyden Professor of Clinical Investigation and Professor of Dermatology and of Epidemiology.
Ahmad Shatil Amin, MD
Dermatologist
Dr. Amin is the Medical Practice Director at the Northwestern Medicine Department of Dermatology. He has a particular interest in the management of psoriasis, eczema (atopic dermatitis), severe acne, and chronic idiopathic urticaria. He is principal investigator or sub investigator of multiple psoriasis and atopic dermatitis clinical trials.
Mark Lebwohl, MD
Dermatologist
Dr. Lebwohl is the Dean for Clinical Therapeutics and a Professor of Dermatology at Mt. Sinai Hospital in New York City. He is a past president of the American Academy of Dermatology and past chairman of the AAD’s Psoriasis Task Force.
Catherine O’Leary, PhD
Clinical Psychologist
Dr. O’Leary is a consultant clinical psychologist in the U.K., who specializes in seeing patients with chronic health conditions. She was diagnosed with psoriasis as a teenager.
Renee Baiano, PharmD
Pharmacist
Dr. Baiano is a Clinical Program Manager at Walgreens and AllianceRx Walgreens Prime, the specialty pharmacy division. She develops educational and clinical programs to help make sure pharmacists and patients with chronic medical conditions work together to improve their health and outcomes.
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Getting Clear on Psoriasis is a new podcast series produced by the non-profit Global Healthy Living Foundation, its arthritis patient community CreakyJoints, and made possible with support from Walgreens. Through personal chats with fellow psoriatic arthritis patients, as well as insights from top Psoriasis experts, host David Brandt explores the ups and downs of navigating psoriasis.
