His goal of treatment, the dermatologist told me during an interview for Psoriasis Advance, was to give psoriasis patients clear skin with the fewest side effects possible. It was 2014, and I’d been working for NPF as a freelance writer for only a few months. I’d been a professional medical journalist for more than a decade, but until recently had avoided writing about psoriasis, which I’d had since childhood, because I feared it would make me dwell on my disease.
As an adult patient, however, I’d consulted with a half-dozen dermatologists, and none had ever said “clear skin” to me, always speaking in terms of “better.” I said as much to my source, and he sighed and broke it to me patiently. Psoriasis patients, he said, are often undertreated. One reason, he said, is that many dermatologists aren’t up on the latest thinking about the need to aggressively treat psoriatic disease.
The most aggressive treatment I’d been offered in my 40-plus years as a psoriasis patient was phototherapy, along with potent — and extremely expensive — topicals. Neither treatment helped my scalp much, or my nail psoriasis at all. I chose my last dermatologist because of his excellent reputation. In high hopes of receiving better care, I visited his office, and he suggested phototherapy. When I explained its results had been minimal and the three-day-a-week regimen not worth the time, he asked me to give it try, insisting his method for delivering phototherapy was different.
I tried it for a couple months, saw little improvement and quit. Instead, I relied on topicals, though their cost, inconvenience and limited results meant I usually filled my prescriptions only in the winter, when my skin is typically at its worst. When I used topicals continuously, my skin improved, but they never completely eliminated a single lesion. I felt like I was using the flimsiest of barriers to hold back a massive inflammatory tide.
Breaking the inadequate care barrier
As I continued my work for NPF, I interviewed more dermatologists who said too many psoriasis patients weren’t getting appropriate treatment. I also talked with psoriasis patients who told me about how they’d struggled to find and get on the right treatment and how much their lives changed when they did.
I decided once again to seek a new dermatologist. My last derm, the one who asked me to give phototherapy yet another go-round, had snapped at me that my “nails don’t count” during a disease-severity assessment. He apologized immediately and said he meant that, for this specific purpose, my nails weren’t relevant. But I felt shut down and pissed off.
So in winter 2017, I went to see a dermatologist I had heard was kind and caring: Katherine Flanagan, of Shades Valley Dermatology in Birmingham, Alabama. I’d already gone the best-derm-in-town route (Dr. Your Nails Don’t Count) and was ready for — at the very least — some compassion. At my first appointment, I was flared badly, my legs and arms covered in painful red scale, my scalp crusted and bleeding from my nervous picking habit, and my nails pitted and lifted away from the nail beds psoriasis was destroying.
I was only a few words into my treatment history when she said, “We’ve got to get you on a biologic.” My eyes welled up, both in relief that the doctor recognized my need and in frustration at the barriers I perceived. I said no dermatologist had ever offered me biologics before, and I was fairly sure my insurance wouldn’t cover it. She said I was definitely a candidate, and that if my insurance company turned me down, we would find a way, that pharmaceutical companies had many programs to help patients like me.
She prescribed Cosentyx (secukinumab). My insurance company wouldn’t cover it, but Flanagan connected me with a Novartis program. I was greenlighted for two years of treatment.
I’ve been taking Cosentyx for four months as I write this. My scalp is clear. My skin is almost completely clear (I have a few pale pink lesions on my lower legs). My nails are healing, and, to the casual observer, look normal.
The ripple effect of clear skin
Having clear skin and getting the treatment I’d needed for so long have affected me more than I anticipated. Experiencing flares and struggling with treatments that made barely a dent in my problems drained my motivation to take care of myself in other ways. I would look at my crumbling nails or inflamed, flaking skin and think, “Why bother?”
As my skin healed, I improved my health in other ways. I had some long-put-off dental work done. I got up-to-date on my preventive medical screenings and went back to regular exercise. I’ve lost close to 20 pounds, my blood pressure and cholesterol are at ideal levels, and I feel more optimism about my body and my health than I have in decades.
I realize I may have setbacks and that the biologic I’m taking might not always work as well as it does now. But just knowing effective treatment and clear skin are attainable has changed my outlook.
I saw my long-time primary care physician recently, and she happily noted the dramatic improvement in my skin and overall health. “There are a lot of benefits of having an intact dermis,” she said.
I couldn’t agree more.
Achieve clear skin
Set specific goals with Treat to Target, our psoriasis treatment guidelines. Contact our Patient Navigation Center for more information and free, personalized guidance to help you live your healthiest life.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.