Peers share their insights on PN and treatment with DUPIXENT

DR DANIEL BUTLER: Even if we have somebody who comes in and they’re like, “I know exactly what I have…” It’s about sort of walking them through their path and how they want to ultimately get where they want to be.

INDICATION
DUPIXENT is indicated for the treatment of adult patients with prurigo nodularis.

IMPORTANT SAFETY INFORMATION

CONTRAINDICATION: DUPIXENT is contraindicated in patients with known hypersensitivity to dupilumab or any of its excipients.
MEG: I started developing itch on my back, at which point it had spread to torso, arms, and legs, and then saw Dr Butler...

I manage a vet clinic…

So, Dr Butler thought that I had maybe picked up something contagious from one of the cats I work with, and I was not convinced…but that was the best guess we had at the time.

DR DANIEL BUTLER: …dermatology, our superpower is the visual…There’s a lot of pressure when somebody comes in, particularly in a visual field, to know it immediately, right? Back then I had never even heard of a papular presentation.

DR SAAKSHI KHATTRI: So, PN is an easy diagnosis to make when you have nodules, because it sort of matches with the description that the terminology says, but there are other forms of PN as well…

DR DANIEL BUTLER: I think there’s this really healthy shift of, listen first and then let the visual of the skin match or not match what you’re seeing and help use that to help make the diagnosis.

MEG: But, you know, you got to keep going because diagnosis is a process and you have to work through the process and hope that whatever you have has actually been defined and can be diagnosed.

DR SAAKSHI KHATTRI: Because when you have answer, it’s sort of like knowledge is power, you know what you have, it empowers you to then sort of make the next decision. That’s one category of patient.

The second is where they’ve seen somebody who told them this is what they have and then they come for a second opinion or a third opinion and I’m like, “No, that’s not what you have.”

Then, the third ones are just because of more awareness around PN, I have sometimes patients go like, “You know what? This is what I have.” I’m like, “Okay, that’s an easy discussion to have because you’ve come having done your homework.”

MEG: It took us about a year to come to, let’s try treating for prurigo nodularis.

DR DANIEL BUTLER: So, at that point I think there was a swell of understanding of PN, and I thought, “Okay, maybe this is an atypical presentation of prurigo nodularis.”

MEG: It was kind of a turnaround from, we’re feeling around in the dark trying to figure out what it is, to we found a thing, and now we actually have a hope of getting it under control.

DR DANIEL BUTLER: When I think about the burden of PN, I think about the visual burden, which is also really challenging.

MEG: I’m just remembering like how unpleasant it was. I was constantly distracted from the rest of my life by the itch. And dealing with my skin and focusing on my skin.

DR SAAKSHI KHATTRI: This is really active disease. And I think the other important part of the stories that we tend to forget, you know, we have criteria of like severity of disease. Which would be very different from what a patient feels to be, you know, disease severity.

MEG: I wish I’d just heard of prurigo nodularis because that wasn’t on my radar because I didn’t know it existed.

DR SAAKSHI KHATTRI: One of the first PN patients that I’d seen...He came to me specifically being sent out by a provider in the community, asking for phototherapy. He had tried topicals, he had things injected, he was on anti-itch medications. So, I basically told my patient that we should try DUPIXENT. For him it was such a 180-degree turn because he came in asking for phototherapy. And then here I was talking about DUPIXENT, which is an injection, every other week, and to sort of commit to that.

DR DANIEL BUTLER: I have the exact same response often, which is, “oh my gosh, an injection!”

MEG: For me it was kind of the opposite, like I can do a shot and it’s only once every two weeks.

DR DANIEL BUTLER: But then explaining some of the safety profile is really critical.

DR DANIEL BUTLER: The most common adverse reactions (with an incidence of greater than or equal to 2 percent) are nasopharyngitis, conjunctivitis, herpes infection, dizziness, myalgia, and diarrhea.

DR SAAKSHI KHATTRI: And this patient of mine, after DUPIXENT, was mostly clear. It was more of a collaborative decision at the end, though one that he does say that he was not expecting to receive at that visit

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MEG: So, after I went on DUPIXENT, the itch started decreasing significantly. And then later on the skin lesions actually finally started to heal after being chronic wounds for so long. It was just a relief that something was finally working and working well, and not just a stopgap treating the symptoms.

I feel like before I started the DUPIXENT we were really treating symptomatically, like trying to control the itch with medications for itch.

DR SAAKSHI KHATTRI: Every patient I’ve put on DUPIXENT— and they’ve done well—they come back and tell me that they should have gone on it sooner.

DR DANIEL BUTLER: I don’t even know if you remember, you sent me a message after you started to get better. It was like, “Thanks for working with me. Thanks for chipping away at this. And we did this together. And I won’t forget that ever.”

DR SAAKSHI KHATTRI: Yeah, that’s a message that talks about trust, you know...so you have that trust with your provider.

MEG: If someone who had been diagnosed with PN wanted, you know, my advice on their treatment path, I would say, “If your doctor is suggesting DUPIXENT as a treatment, go for it.”

TERRY FALEYE: When you do have an FDA-approved option... I think that that’s where the paradigm just really shifts.

INDICATION
DUPIXENT is indicated for the treatment of adult patients with prurigo nodularis.

IMPORTANT SAFETY INFORMATION
CONTRAINDICATION: DUPIXENT is contraindicated in patients with known hypersensitivity to dupilumab or any of its excipients.

TERRY FALEYE: The itch, I think the itch is the number-one thing that drives them in, that chronically is kind of just plaguing these patients.

EILEEN CHEEVER: We know now that these patients truly want to stop itching and scratching and get relief, but there’s a shame that they can’t. So I had a new patient dealing with this condition for multiple, multiple years, had seen many different providers, given topical steroids, systemic steroids. And she was actually told, “Well, if you could just stop itching, if you could just stop scratching, this problem wouldn’t be there.”

TERRY FALEYE: I think that’s where that FDA approval really gave credibility. We are now truly associating it as a disease, not just a self-inflicted spot that you did, that you created.

EILEEN CHEEVER: And I think validation really is a bridge to releasing those chains of guilt, self-blame, and shame.

ANDREW MASTRO: Absolutely. I always start off the visit with saying it’s not your fault. Number one, done.

EILEEN CHEEVER: I think, we should keep in mind our patients who come into our office misdiagnosed. And by the time they’ve gotten to you, they’ve gone through a number of different treatments...to essentially treat a diagnosis that in the end they didn’t end up having.

ANDREW MASTRO: All this emotional scar tissue, it’s a lot. I’ve had one specific patient, mid-thirties. He had come to me for a different issue. And as I was talking to him, noticed that the itching, I asked about it. And he essentially had given up hope.

So that begs the question of how many PN patients are actually, really out there that we may not be catching. Because those nodules, sometimes they’re hiding.

EILEEN CHEEVER: Sometimes you have to put on your detective hat because what do our patients say, “Well, you caught me on a good day. It’s not a bad day today.” So sometimes you really do have to be aware of the presentation of the different morphologies.

ANDREW MASTRO: And sometimes, you really have to touch. It’s the idea that we’re building that bridge to not be afraid to touch something that they may be afflicted with.

You felt you were grasping at straws. “I don’t really have answers for your itch, which is the main driver, so sorry, but we’re going to handle these individual lesions if we can.” How can you handle 50, 60 lesions ?

EILEEN CHEEVER: A tall order. You know, prior to DUPIXENT, our treatment options were so limited and by no fault of our own. And now knowing that there is a scientific reason why these patients have had PN, and then being able to talk with our patients more realistically about those treatment options. And we have a medication that can target the pathway. And I actually give them a name. I tell them it’s the IL-4 pathway, the IL-13 pathway.

ANDREW MASTRO: So we all have the same concept of what mechanistically...in terms of what it’s addressing, in terms of the itch, the nodule formation, in terms of the inflammation that’s happening internally.

TERRY FALEYE: I have a patient. She was a 40-year-old African American female...and for years, the only treatment that she’s ever been offered was intralesional so far as corticosteroids. A lot of those areas where they were hyperpigmented or violaceous...the reduction in nodules, especially in an African American female was huge.

I think even itch was big, but I think definitely so far as the improvement so far as in the nodules, and just the appearance of it was significant for her. Because she was like, now it’s a case where she was just like, “I don’t look like I’m just scarred up.”

ANDREW MASTRO: So, with the approval and with having an option in terms of DUPIXENT, it changed the way that I communicated. I’ve gained more confidence in handling this versus more hopeful prior. I feel like the patients recognize that within us.

TERRY FALEYE: So, I’m just curious, you guys. When patients, when you bring up the notion of DUPIXENT, what concerns them?

ANDREW MASTRO: I think knowing the data and knowing what was seen...actually, the safety profile:

The most common adverse reactions with an incidence of greater than or equal to 2 percent are nasopharyngitis, conjunctivitis, herpes infection, dizziness, myalgia, and diarrhea.

EILEEN CHEEVER: My patients ask if the medicine is a corticosteroid or if the medicine is an immunosuppressant. We know scientifically that these medicines are not that.

ANDREW MASTRO: Yeah. For me is, how long do I have to be on it and what does this mean? How I address that is say, “If we’re...itch is great and our nodules are down, my hope is that we’re going to want to stay on it.”

As I mentioned, my patient was a client-facing individual. This is a big guy. Big guy, tattoos. We had to work through some things. He had to open up to me. But in that three-month visit, when I walked in the room... his itch, his nodules, everything had gotten so much better, tears started streaming down. And it was amazing, but he kept apologizing for, “I’m sorry,” almost as if he was ashamed of now showing the emotion. But it was the culmination, I think, of the years being misdiagnosed.

EILEEN CHEEVER: And I think now when we have a patient that comes in with PN, there is this hope, and this optimism, and this positive energy that now I can go in and provide these patients with a treatment to help alleviate that disease... What about you guys?

ANDREW MASTRO: Yeah, I completely agree...And having the background to say, “Hey, it’s not just me. Here’s evidence of why this can actually help you.” It is so optimistic.

TERRY FALEYE: And that in turn just really, I don’t know, just warms your heart in a lot of ways because it’s just, we remember when we didn’t have that.

EILEEN CHEEVER: And that’s why we got into this profession, to help people.

DR ELMARIAH: I'm really excited to have the opportunity to talk with you about a condition in dermatology that I feel is so profoundly instructional and educational. A disease that is so impactful for patients: prurigo nodularis.

DR BERGER: And now is well recognized. So, it was a disease waiting for a treatment.

INDICATION

DUPIXENT is indicated for the treatment of adult patients with prurigo nodularis (PN).

IMPORTANT SAFETY INFORMATION

CONTRAINDICATION: DUPIXENT is contraindicated in patients with known hypersensitivity to dupilumab or any of its excipients.

DR ELMARIAH: Throughout my lifetime as a dermatologist managing PN, I have realized that it is one of the hardest conditions to deal with. Patients struggle often for a very, very long time.

DR BERGER: Well, I think the under-appreciation of the amount of suffering the patients undergo, the intensity of the itch, the social stigmatization that the lesions create. All these things make it particularly challenging for the patient to deal with.

DR ELMARIAH: That itch is so relentless, it impacts all aspects of the patient's day, all aspects of their night. And they really can't imagine being without it.

DR BERGER: I think one of the ways that it reflects in the patient presentation is the amount of desperation the patients express in their voice.

DR ELMARIAH: The first thing I do is try to set the foundation where the patient knows that I'm listening, that I care.

DR BERGER: I think how the disease has impacted the patient is something that no one ever asks. They've told doctors they itch, but they haven't told them how much. And once that discussion begins, they feel that they have an ally as a dermatologist.

DR ELMARIAH: I welcomed DUPIXENT into my practice. Here was a drug that could address the multiple aspects of the pathophysiology, the underlying pathophysiology of PN. A disease that previously had been so poorly understood.

DR BERGER: And I think it led patients out of this space where they weren't understood to a space where they had something that people could treat.

DR ELMARIAH: Having a monoclonal antibody that can simultaneously target IL-4 and its ability to tame T-cell differentiation and type 2 inflammation as well as influence IL-13 signaling that is important in the inflammatory components—and also the cutaneous sensitization and neural components of the disease—is pretty profound. And in particular for a disorder like PN.

DR BERGER: I think that the concept of Th2 inflammation has been very powerful in science in general, but that this disease is manifesting itself as the immune system and the nervous system of the skin leading to this dysregulation. So I think that over time we've sort of turned the boat a little bit from a disease of desperation to one of hope. And DUPIXENT has helped us with that.

DR ELMARIAH: It built an awareness about this disease that had a huge impact on the field. For my patients themselves, I think having someone come in and improving in their itch for the first time in months, years, sometimes even decades. It's such an intense experience. They're beginning to see the improvement, you know, in their nodules or even that many of their nodules have already resolved, and very often, you know, it's followed by, it's followed by a hug.

DR BERGER: Yeah, I think it's been a gratifying journey for all of us to see patients improve. Patients who were very desperate in the beginning and to sort of have a few patients come back in the clinic every time that at the beginning were challenges and now are your friends and are willing to talk to other patients about the experiences. It's just very gratifying.

DR ELMARIAH: One of the things I love about DUPIXENT is its demonstrated safety profile. The most common adverse reactions with an incidence of greater than or equal to 2% are nasopharyngitis, conjunctivitis, herpes infection, dizziness, myalgia, and diarrhea.

DR BERGER: In a complex disease like this, the safety becomes paramount.

DR ELMARIAH: I remember one patient who came in, very complex medical history. Our very first visit, she was just in tears. I remember just even talking about DUPIXENT as an option was something that again brought her to tears. And she came back and she said she finally had hope. Her skin was feeling better.

DR BERGER: This patient had been in treatment for 150 days with topical steroids, topical tar, phototherapy, and basically was not responding. We put the patient on DUPIXENT, and the lesions began to heal. And for the first time in more than a decade, that intensity of itch—it's so gratifying when they get better. Grateful is a common response to patients with PN who go on DUPIXENT.

DR ELMARIAH: Yeah, it's true.

DR BERGER: So Sarina, it's been a great pleasure working with you here today, and I'm so delighted we've had this opportunity to talk about prurigo nodularis.

DR ELMARIAH: Thanks, Tim. It's been great to speak with you not only about PN, but how DUPIXENT's been changing the field.

DOUGLAS: Let's talk about prurigo nodularis.

VICTOR: There was a time that I would've been very discouraged because it would've taken me a long time to try to work out what this condition is, explain it to the patient.

DOUGLAS: It's so exciting right now to be in dermatology because now you walk in like, “Yeah, I can. I've got something to offer them.”

INDICATION

DUPIXENT is indicated for the treatment of adult patients with prurigo nodularis (PN).

IMPORTANT SAFETY INFORMATION

CONTRAINDICATION: DUPIXENT is contraindicated in patients with known hypersensitivity to dupilumab or any of its excipients.

VICTOR: So, Doug, when it comes to our patients who have prurigo nodularis, it's been a condition that, for many years, has been quite difficult for us to work with.

DOUGLAS: These patients complain tremendously about itch, and the fight to try to not itch when they're in certain social situations. A gentleman the other day, he says, “You just don't know how tough it is to fight the itch when I'm sitting there talking to someone.”

VICTOR: There was a lady that I walked into the room to see. She was a new patient and she was weeping. I looked at her arms that were excoriated, bleeding from the condition. She had scars.

DOUGLAS: On the outskirts of our town for a couple years, they had a large billboard that had a picture of this gentleman with all these excoriations all over his face. And it was for a drug rehab center that they were advertising. And she says, “People look at me and they say, 'Do you have the same problem as that person on the billboard?'” And so I think these people are so relieved when I say “I want you to know that your body is doing something that's causing this and we've got things that can help.”

VICTOR: I tell patients, for example, explaining autoimmune, we have a very complex immune system, and when it's firing on all cylinders, there's a balance, right? But it's imbalance that occurs. So you're overproducing these proteins or cytokines or interleukins and they're so specific we even have name numbers for them. So it's 4 and 13.

DOUGLAS: But also other players come in like interleukin-31 and others that can drive this whole cascade.

VICTOR: We have too much of that, it also engenders an itch factor in the skin. You scratch it and now you make more. “Oh,” they're like, “Wow. So it's a vicious cycle.” To have something now that is not an immunosuppressant, not a steroid, like DUPIXENT.

DOUGLAS: And it's so nice to be able to tell them that there is a demonstrated safety profile. The most common adverse reactions, with an incidence of greater than or equal to 2%, are nasopharyngitis, conjunctivitis, herpes infection, dizziness, myalgia, and diarrhea.

VICTOR: My first DUPIXENT patient for prurigo nodularis when it was approved, she just cried all the time. And I began her on that medication. It was significant for her that she was able to achieve a place where there was a lack of itch.

DOUGLAS: I had a mother who had several young kids. And when I put her on DUPIXENT and she began to see this decrease in the nodules and began to see the improvement in itch. So it makes what we do very satisfying to have those patients who come in that are prescribed DUPIXENT and they tell you that their itch is better, whether it's day or night, and that the lesions that they had so many of they're seeing begin to resolve.

VICTOR: There's a bonding experience when you're there with them and then all of a sudden you've got that improvement.

DOUGLAS: I had a similar experience too. A gentleman that I had who is a used car salesman. All of his employees, they have kind of a dress code. They're supposed to wear khakis and a golf shirt, but he's had to get the exception because he feels like his arms were so covered in these nodules and these excoriations that to wear something long sleeve. When he started the DUPIXENT the reduction in the number of nodules that he experienced, it makes what we do a lot of fun.

VICTOR: I really want them, since they've lived for many years with discouragement, to celebrate the improvements.

DOUGLAS: Victor, this has been very enjoyable. Even though we've known each other for years, it's just nice to be able to really sit down and talk about the difference that DUPIXENT's making in our patients with prurigo nodularis.

VICTOR: Thank you, Doug. I appreciate that your experiences with prurigo nodularis patients is similar to mine. And I'm just looking forward to spending more time talking about these topics with you in the future.