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Opinion
Video
Patient Perspective on Upadacitinib for the Treatment of Atopic Dermatitis
Author(s):
Trinity Flint shares her experience using upadacitinib to treat atopic dermatitis and the impact it has had on her quality of life.
Diego Ruiz Dasilva, MD, FAAD: I’d like for you to talk a little bit more about your oral treatment with upadacitinib, how it’s working for you, and how satisfied you are with it.
Trinity Flint: I really enjoy what I take now. It’s very simple for me to take and incorporate into my routine because I already take medication on a daily basis. So, I just threw it in with the rest of them, and I don’t want to say I’m cured, because I’m sure I’m not technically, but that’s how I like to view it.
Diego Ruiz Dasilva, MD, FAAD: I love to hear that from you, because you’re pretty young, although you’ve dealt with atopic dermatitis [AD] for a long time. But many of us clinicians and certainly patients much older than you who have dealt with it for decades will remember a time in dermatology when the therapies we gave could not provide this kind of sensation that you have a feeling “cured” or just so much better to where it doesn’t make a big impact on your life. So, that makes me so happy as a doctor to know that we can do that for some patients.
Trinity Flint: After I was able to get the prescription covered by my insurance and I was taking it, I significantly felt less itchy the next day and, basically, the only thing I really had to wait around for was the AD that I was already experiencing to heal, but it didn’t get any worse, and I immediately noticed that I was significantly less itchy throughout my day.
As soon as the AD was healed, I noticed differences when it was no longer visible, which was very nice, and sleeping was a game-changer because that was when I would wake up and it would look like I had third-degree burns on my body throughout the night, like somebody had burned me while I was sleeping. It would look pretty bad when I woke up in the morning, because typically, I’m a pretty heavy sleeper. So, it never really prevented me from sleeping. It would just be a shock for me to see when I would wake up the next day.
Diego Ruiz Dasilva, MD, FAAD: Tell me about how your life has changed in terms of having to apply topical medicines or how you view yourself, how you interact with the world. Tell me how that’s changed with your treatment.
Trinity Flint: It’s definitely made my confidence spike up quite a bit, just due to the fact that I don’t have to be self-conscious about what people are possibly thinking about my skin when I’m walking around. So that is generally just a better quality of life. I used to have a lot of issues sleeping because that was where most of my itching would occur and I wouldn’t have much control over that. I definitely sleep a lot better now. Overall, it’s made me happier as a person knowing that I don’t have to have that issue anymore because being constantly itchy and feeling like there’s always something on you, or just flaky skin, or whatever it may be is not a great quality of life.
Diego Ruiz Dasilva, MD, FAAD: I absolutely hear you on that. What’s your advice for patients who have just been recently diagnosed with eczema?
Trinity Flint: Don’t give up hope, because I’m sure everybody is different and there are so many treatments coming out every single day in the medical space for almost everything nowadays. So, even if something doesn’t work for you right now, it doesn’t mean that you won’t find a better medication that works for you in a year or 2. You’re going to find something that works for you. It just really does take a second to find a doctor who actually listens about what you’re experiencing and then the process after that, but it’s definitely worth it in the end for sure.
Diego Ruiz Dasilva, MD, FAAD: And what would you have done differently today if you were to go back to an earlier time when you were dealing with atopic dermatitis?
Trinity Flint: I’m not exactly sure necessarily because I was a minor, so my mom was helping me with a lot of that. I would probably be more vocal about what exactly I want, because when I came into see you, I was very set on what kind of treatment I was looking for and I did not exactly want to budge from that. That’s something I feel like a lot of people struggle with, and in a medical sense, is really speaking up about how they feel and how something is affecting them and really advocating for themselves.
Diego Ruiz Dasilva, MD, FAAD: I love that you’re saying that, because I think that’s a huge piece of all of medicine. To your point, in dermatology and certainly for atopic dermatitis, you have to verbalize how much something’s bothering you, how it affects your quality of life, and what kind of treatment you’re looking for, because if not, the clinician seeing you may, and not intentionally, downplay how you’re doing and think to just give you another steroid cream or even nonsteroid cream, but just string you along, not from a bad place, but just not realizing how much it bothers you and how much it impacts your life. And especially I would say because you had a very prominent rash, but some people have a rash that doesn’t appear as impressive but are still just as itchy, believe it or not. And it’s very tough for just someone looking at the person to realize that without them talking about their life and their symptoms.
Trinity Flint: I agree. I eventually realized as I got older that no matter who I talk to, they can’t read my mind. That’s just human nature, so I do believe that it really plays a role in both ways for sure. You definitely have to advocate for yourself as your own patient and then hope and pray that your doctor advocates for you as well.
Transcript edited for clarity
