What Does It Feel Like to Have Psoriasis? 3 People Share Their Experiences
Key takeaways:
Psoriasis can feel different depending on the type and severity.
It can appear almost anywhere on the skin or inside the body.
Not everyone uses prescription medication. But for many, that’s the only thing that brings relief.
Every person with the chronic skin condition known as psoriasis tells a different story. From the kind of psoriasis to what body parts are affected and how much it alters daily life, every case of psoriasis is unique.
For some people, psoriasis is an intermittent nuisance. But others experience severe itching, skin scarring, and psychological struggles.
Here’s how three people describe what it feels like to have psoriasis.
‘It was just everywhere’
Before 42-year-old Natasha D’Arcangelo of Orlando, Florida, found the right medication for her, psoriasis had spread over most of her body.
She was diagnosed with psoriasis in 2001. It started with a quarter-sized patch on her scalp. And, over the next 6 months, the scaly bumps covered her entire scalp and spilled onto her forehead.
Within a few years, the psoriasis had spread to her arms, legs, chest, back, and even inside her ear canals, Natasha says.
“It was just everywhere,” she says. “And I scratched in my sleep, so I would wake up in the morning and my sheets would be bloody.”
With such extensive psoriasis spread, Natasha says, her daily shower routine could take an hour and a half. That included showering, applying topical medications, then sealing in the medication with a thick, petroleum-jelly-type substance. But the topicals proved ineffective in her case, she says.
She moved to Florida from New York in 2011, partly because she thought the sun and access to saltwater would help her psoriasis. And it did help slightly, she says.
Then, a dermatologist prescribed her a weekly injection of Enbrel (etanercept) in combination with topicals and light therapy, which made a major difference. Because of a couple of interstate moves that followed, she changed health providers several times. And her next dermatologist recommended she switch to Stelara (ustekinumab), a different injectable medication.
“My body hated Stelara, and it looked like I had never been on any medication,” Natasha says. So she was prescribed Humira (adalimumab), a different injectable medication used for treating autoimmune conditions.
Humira cleared her skin better than Enbrel or Stelara. However, all of her liver results started coming back abnormal, she says.
In 2015, a new provider recommended that Natasha try Cosentyx (secukinumab) injections, and she’s been using that treatment since. She says that, within 6 months, all of her liver levels went back to normal and that her skin cleared completely.
“It didn’t just clear up my skin. My scarring is completely gone,” she says.
Because of her brown skin, Natasha says, her psoriasis had caused more pronounced residual scarring. But it had also taken a psychological toll.
“Think about the impact on your mental health when you’re out in public and people won’t stand in the same line at the grocery store as you. It’s like having leprosy,” she says.
Medication brings relief
Alina Eisenhauer, a 52-year-old professional chef who lives near Boston, says she gets plaque psoriasis flare-ups at the base of her scalp, above her ears, and on her belly button and the insides of her elbows.
She started to feel the effects of psoriasis about 7 years ago when she developed thick, bumpy, scabby patches.
“You want to scratch it because it’s itchy, but that makes it sore. That is not fun,” she says. “If you put product on your hair, it can sting.”
Using something cold to numb the itching is about the only thing that brings relief, other than medication, Alina says.
She has learned to control the severity of outbreaks by managing her stress, reducing how much alcohol she drinks, and using a topical liquid medication called clobetasol propionate. She also says that reducing or avoiding gluten in her diet helps manage her symptoms.
“[Psoriasis] never really goes away,” Alina says. “You’re just controlling it.”
The thing people get wrong the most about psoriasis, she says, is thinking that it’s contagious. And even when people know it’s not contagious, some are hesitant to touch your skin, she adds.
Hiding psoriasis patches with clothing tricks
Savoy Carlton, a 30-year-old clothing designer in Jacksonville, North Carolina, used his design skills to hide his patches of psoriasis, which were mostly on his arms. But that was tough during the hot Carolina summer.
“I didn’t want anyone to see my arms,” he says. “And I can manipulate my clothing.”
Savoy developed psoriasis in 2009 when he was in high school. It started on his thumb and migrated to his forearms, with spots appearing on his legs, scalp, and torso.
On his skin, Savoy says, psoriasis looks flaky. It’s not a constant itch, but the itch occurs randomly and then goes away.
Savoy manages his dry, flaky skin with black seed oil, castor oil, or petroleum jelly. Exposure to sunlight also helps, he says.
He cut out red meats, sodas, and alcohol, and he reduced how many sweets he eats. And he thinks those changes in his diet have helped.
Savoy says he no longer tries to hide the patches and doesn’t shy away from short sleeves. People sometimes ask him if his arm was burned, but now he doesn’t mind talking about his condition.
“You’ve got to embrace it,” he says. “I just look at it like a tattoo or a war wound. It opens up conversation.”
What does the doctor say?
Patricia Pinto-Garcia, MD, MPH
Medical Editor
Psoriasis is an autoimmune condition. And, like all autoimmune conditions, it can be unpredictable.
Different people with psoriasis can have very different experiences. But your own experience with psoriasis can change over time, too. You may develop new triggers, or your psoriasis may get better or worse over time — seemingly for no apparent reason.
Science still has a lot to learn about autoimmune conditions, and your healthcare providers might not have all the answers. So it’s important to keep track of what seems to help or worsen your symptoms. You might discover that simple changes really help bring down your flare-ups.
It’s always a good idea to get advice and ideas from other people with psoriasis. But keep in mind that what worked for someone else may not work for you. And that’s OK. It doesn’t mean that there isn’t something else out there that can help with your symptoms.
When it comes to prescription treatments, the same rules apply. It may take a while to find the right combination of medications. And even after a long period of control, it’s possible for your regimen to stop working. While it’s frustrating to start over, it can also be a chance to try newer treatments that might not have been available before. You might find something that works even better or has fewer side effects.
Why trust our experts?
