From healthcentral.com
After years of trial and error—and painful symptoms—Max Lomboy found a psoriasis treatment that worked. Here’s how he got there
If you live with psoriasis, you know that landing on the right treatment can be a complete game-changer for your skin. But chances are, you also know that finding the magic med isn’t always easy. It can be a journey of trial and error that’s often made longer by having to navigate a complex healthcare system, as 41-year-old Max Lomboy learned firsthand after he was diagnosed with psoriasis five years ago.
It’s Just a Rash
It all started when he noticed a small, silver dollar-sized patch on his back. Thinking it was a scab—it wasn’t painful—Max, who lives in Cedar Park, TX, tried to pick it off, but it came right back. A Google search led him to conclude that he had ringworm (which is often marked by a small, round rash), which he tried to manage with over-the-counter topicals. When those didn’t work, he knew it was time to see a dermatologist.
Max was shocked when the dermatologist told him the patch was psoriasis, a chronic inflammatory skin condition with no cure. “It didn’t run in my family. I didn’t know what triggered it,” recalls Max, who was living in San Francisco at the time. Still, he figured it would be relatively easy to deal with using prescription topicals, since the patch was small and not uncomfortable. “I almost thought of it as an embarrassing tattoo. No one’s really gonna see it, so I don’t have to think about it too much,” he says, noting that it may have been more challenging if he didn’t already have a serious girlfriend, since he’d have to explain the patch to potential new partners.
A Total Body Takeover
Things took a turn about six months later when new psoriasis patches began forming over Max’s body in rapid succession. “I don’t know if stress was a trigger, but it just went nuts. Patches started showing up everywhere, from the top of my scalp to the soles of my feet,” he says. They also started getting bigger—the largest one was the size of a baseball—and becoming painful and irritated. “I would sit down, and a patch would split and bleed,” he says. “I felt like I was in a horror movie, and it was taking over.”
When Max went back to his dermatologist, he was told that his psoriasis body surface area (BSA) coverage was 80%, putting him in the category of severe psoriasis. His insurance provider had required him to try and fail on a topical treatment before agreeing to cover Otezla (apremilast), an oral med for moderate to severe psoriasis that works by works by calming down the body’s overactive immune systems.
The prescription kept his psoriasis from getting worse, but it didn’t make it improve. And it made him feel nauseous. Seeking another solution, he was able to get coverage for UVB phototherapy, but that didn’t help either. “My body ended up having a really poor reaction and it created more psoriasis plaques,” Max recalls. “I didn’t know what to do.”
Embarrassing complications began arising at work, too. Max worked as a bank branch manager, and one of his fingernails fell off while he was talking with a customer. “They made a joke that I had press-on nails,” recalls Max, who tried his best to shrug it off in the moment. But inwardly, he was both mortified and worried. “I was like oh my god, what’s happening to me? People thought I was either not hygienic or seriously sick,” he says. Shortly after, he decided to take some time off to focus on getting his skin under control, using the paid time off (PTO) he had accrued since he couldn’t get disability coverage.
Fighting for Treatment
Around this time, Max recalls learning about biologic treatments for psoriasis and asking his dermatologist if he qualified. “When I mentioned it to my doctor, they said I had to go through certain [treatment] stages first. But it had been a year and a half, and I was literally bleeding in my chair while we were talking,” he says.
Max’s cousin, who had previously worked in a dermatologist’s office, suggested that Max ask his dermatologist for a sample dose of a popular injectable biologic medicine and pay for it out of pocket. It cost him a few thousand dollars, “but my cousin told me that if the medication showed results, I could take that to my insurer,” and convince them to cover it, he says.
To Max’s great relief, the biologic worked. “Within that week I noticed my plaques started to get softer. After another week, they just looked like areas of discoloration. Maybe a month after that, my nails started to come back,” he says. With proof that the drug was helping him, his insurer finally agreed to pay for it. He was thrilled to be able to trade his regimen of pills and creams for a single, every-other-month injection.
But within a few months Max started to notice signs that his psoriasis was on the verge of roaring back. He’d start to notice new plaques forming on his scalp the week before he was due for another injection, suggesting that his psoriasis inflammation was ramping up towards the end of his dosage cycle. “When I’d go for a haircut, I’d always be nervous because I’d have to explain to the barber what it was and that it wasn’t contagious,” he recalls. Terrified of returning to a full-blown flare, he knew he was in desperate need of a treatment adjustment.
Finding Real Relief
Max had moved from San Francisco to Cedar Park, TX, while he was on the first biologic. His search for a dermatologist in his new town led him to Donna Hart, M.D., who treats psoriasis patients at Westlake Dermatology near his home. Dr. Hart recommended switching Max to Skyrizi (risankizumab), another type of injectable biologic that she’s seen work on psoriasis patients with his similar symptom and severity profile.
Like his previous biologic, Max needed to get an injection every eight weeks. But unlike the old med, his symptoms went away—and stayed almost completely controlled until he was due for his next one. “The week before my next cycle, I’ll notice some very slight psoriasis in my scalp. But it just looks like dry scalp,” he says.
That was three years ago, and happily, the treatment regimen has kept Max’s psoriasis in check ever since. He’s both thrilled and relieved that his skin looks and feels better, and that he’s no longer on the exhausting hunt for a treatment that’s both effective and affordable. But he’s still stunned by how much he had to go through to get to this point. “It feels almost criminal that someone has to do those daily oral meds before trying this newer option,” he says.
His Advice for You
Max is convinced that his psoriasis would have improved much faster if he’d been able to access his current medication sooner. “I don’t think anyone was trying to act malicious, they just wanted to keep costs low,” he says of his provider in San Francisco. Still, he says that the experience serves as a testament to the importance of persisting being your own advocate when you have psoriasis—or any chronic condition that you’re struggling to manage.
“You have to keep going when you hear no. You have to ask questions, ask for recommendations, do your research, and try to talk to people who’ve gone through it,” he says. “There is a light at the end of the tunnel, and something will work for you.”
https://www.healthcentral.com/condition/psoriasis/long-road-to-clearer-skin
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