More Than Hives: Discussing Chronic Spontaneous Urticaria

Transcript

This transcript has been edited for clarity.

Introduction

Adam Friedman, MD: Hello, and welcome to Medscape Care Cues. I'm Dr Adam Friedman and I'm joined by my good friend and colleague, Dr Shawn Kwatra. Welcome, Shawn.

Shawn G. Kwatra, MD: Thanks so much for having me, Adam.

Friedman: I'm so excited to have you here and to chat about a disease state that's near and dear to my heart: chronic spontaneous urticaria.

We're really going to focus today on some of the journey that these patients experience, the interactions between themselves and healthcare practitioners, which sometimes can be an impediment in its own right in terms of getting both to the same place, which is a mutually agreed upon treatment plan to get these patients clear.

Maybe before we dive into that, in 30 seconds or less, can you define — to kind of level-set — what is chronic spontaneous urticaria?

Defining Chronic Spontaneous Urticaria

Kwatra: Chronic spontaneous urticaria — that's a mouthful. Right? To me it just boils down to having hives or angioedema, lasting 6 weeks or longer, no clear cause or etiology.

Simple, straight to the point, but the term can be a little bit confusing. And so the first thing I have to do is simplify, so I say, "This is a really fancy term for those welts, those hives that you have, when you get itchy and red," so I have to break that down. What about you? Have you had any issues with first giving a diagnosis, going over the symptoms, all of those different features?

Friedman: Part of the challenge, which we'll get to in a second, is that there's no underlying cause. The other thing, with respect to diagnosing this and distinguishing from "urticarial things," is that each individual lesion lasts for less than a day or so.

Kwatra: And it just happens so suddenly and it's so intense, but it can be infrequent. It's very hard to capture it. What I think is going on is that we are systematically undertreating chronic spontaneous urticaria. "Oh, it's just hives."

Friedman: You say the name "chronic spontaneous urticaria" and they're like, "Who, what, when, where, and why is it spontaneous? And when are you going to tell me that it is the blue cheese dressing that's causing this?"

What are some of the roadblocks that you've encountered or that you can imagine that can happen between the patient and the healthcare practitioner when even talking about this disease, let alone treatment options?

Patients Want to Know: Why?

Kwatra: The number-one thing the patients want to know is "why?" And I know we've both been there. "I went to see the allergist, I got the whole panel, I cut out milk, I cut out certain nuts, I cut out other foods; I think it might be a new cream I'm using," this and that. Folks want to know exactly what the cause is. And so I think that is the most important hurdle in communication between a provider and the patient.

So, what I try to do is tell the patient, "We know that this is your immune system being overactive, and there's quite a variety of rashes people can get. You can get eczema; you can get psoriasis. Well, you tend to have hives," and I talk about one of the positive things about having this disease — and I've had chronic spontaneous urticaria myself — is that oftentimes it tends to be a bit more transient and temporary than other, fixed diseases, like psoriasis and atopic dermatitis.

"If we treat you and we get you under control, there's actually a pretty reasonable chance after a few years or less that it may go away on its own or be quiescent." So, then I try to transition that into "let's talk about things that we can do," but I always wonder, honestly, as a healthcare professional, when I'm saying this, am I truly resonating?

Is there a certain way that you go about that? Because I know you; I'm certain that "why" is a big proportion of that patient encounter with these chronic spontaneous urticaria patients.

Friedman: One hundred percent. And it's not even just the "why," but they're coming in expecting you to do certain things. And I would argue that for the majority of the chronic inflammatory skin diseases we manage, we don't know the why; we know the what; we know what's happening, and especially in the past 5-10 years, we've learned a lot more about what is going on underneath the hood with respect to the pathophysiology. And because we know the what, we then know what to do next.

But, taking a step back, I like to ask open-ended questions, like, "What do you hope we accomplish here? What have you experienced and what has bothered you about your journey? Tell me about your experience. What makes you think that? Who told you that?" I think that also breaks down that kind of armor and guard.

Discussing Treatment

Friedman: And that's kind of the next question I have for you: What are some of the pain points you have witnessed with these patients, and how do you loosen the gears to get that door open so you can have a conversation about therapy?

Kwatra: I try to summarize by saying, "We're not going to be able to say it's one particular factor. Let's focus now on some strategies that we have to improve your symptoms. And we know the natural history of disease is that it tends to get under control after a few years vs being chronic for a very, very long time. So, let's get this disease under control and let's talk about options. What are the symptoms that are bothering you most?"

And then we focus on the itch. Well, it's a disabling itch and, personally, I really can empathize. So, we talk about itching; we talk about sleep; we talk about how the patient may be embarrassed by these lesions. I think transitioning from the why to the symptoms to "What can we do to improve those symptoms together" often can be a bridge.

What I like to say is there's a variety of things that are causing these rashes and the itching, and we have a variety of ways to stop it. We have many different targets. We're learning more about them every day. Let me talk to you about a few things that we have. I'm curious about your approach too.

Friedman: I think another piece, even before we get to therapy, is that they ask a lot about testing; they ask for testing, they bring testing with them. They want a biopsy, and that's where talking about [it is helpful]: What do these tests actually do for us? What do they tell us? It boils down to the point you made: At the end of the day, it's about getting you under control and feeling better. The why starts to fade away when you get your life back.

From Antihistamines to Newer FDA-Approved Treatments

Kwatra: Absolutely. What I try to do is paint the picture for patients that there's a variety of little cells in our bloodstreams, and at any moment, they can release a bunch of things that irritate your nerves, and you have this crazy itch sensation.

Friedman: I say they "throw up" [instead of "release"].

Kwatra: They throw up!

Friedman: They just spew everywhere.

Kwatra: Everywhere! And so then we talk about, well, what are some of the things that they're spewing that are irritating these nerves?

We talk about antihistamines. We thought they were the most effective therapies, and in some patients, yeah, they can help. The guidelines say you can go up to four times a day — if you can tolerate it — of these nonsedating antihistamines.

Friedman: And quickly, too. That's a big point — that you don't wait 6 months to go up to twofold.

Kwatra: Exactly.

Friedman: You ramp up real fast.

Kwatra: Fast. Don't suffer. I think that's probably one of the points where a lot of patients have suffered, in that they've been stuck in this antihistamine mode for way too long.

Friedman: Right. Has that been your experience too?

Kwatra: Yes.

Friedman: You know, if you're coming in to see me, you're not starting at the basement. We're at least going two, maybe three times the recommended dose. At 3-4 weeks, they're maxed out, and at that point, they're not where they need to be; roughly 50% of patients aren't going to be. We're then stepping up to either an FDA-approved advanced systemic or something off-label, which I love doing. I mean, being a dermatologist, we are all about off-label, and there are a lot of off-label options. But they also require some more discussion.

So I talk to patients about this: "Guess what? For so long, we had over-the-counter, we had off-label; but someone — I say "one" as a collective — took the time to better understand this disease and to get something FDA approved." I think that when you have an FDA-approved medication, it signals that we care and that you are not being disenfranchised.

Atopic dermatitis, psoriasis — these patients have great resources when they're looking for answers or looking for someone who focuses on this. Psoriasis has the National Psoriasis Foundation; atopic dermatitis has the National Eczema Association. There really is not a home for chronic spontaneous urticaria.

Kwatra: Because there's a lack of these patient-support groups for chronic spontaneous urticaria, it really places the onus on us. We have even more of a responsibility to educate patients properly about this disease, knowing that there aren't as strong resources available in the community.

Friedman: Absolutely. Well, it's been an absolute pleasure. Thank you for sharing your expertise with me and everyone else — not just as an expert in the area but as someone who has suffered through this himself.

Kwatra: Absolutely. Great discussion. Thanks so much for having me.

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