Community Views: The Inconvenience of Scalp Psoriasis

The scalp is one of the most common locations of plaque psoriasis. A recent study found that, among patients with psoriasis, the prevalence of scalp psoriasis was between 45% and 56%.¹.

Scalp psoriasis generally presents as patches and silvery-white scales that flake and may be mistaken for dandruff. Unlike dandruff, scalp psoriasis causes a silvery sheen, and affected areas are extremely dry, often to the point of cracking and bleeding.¹.

What do those with scalp psoriasis have to say?

We were curious about what you find most frustrating about managing life with scalp psoriasis. We turned to the PlaquePsoriasis.com Facebook page. We asked community members to tell us: “What is the biggest inconvenience of having scalp psoriasis?”

Your responses resonated with each other. We wanted to share them with more of the community.

Itching and scratching

Scalp psoriasis causes horrible itching. You spend much time scratching – or trying not to scratch! It can feel like you have lice or bugs in your hair. One of your top complaints with scalp psoriasis is how much it itches.

“The incessant itching, then, of course, the obvious flakes afterward.”

“People thinking you have lice because you’re constantly scratching.”

“That feeling like bugs are crawling all over your head. For me, that happens in my ears too, like bugs all over, in and out.”

“Trying so hard not to scratch during the day then waking up with blood spots on the pillow after digging your scalp in your sleep.”

Constant flaking

Plaques are always flaking. Whether from scratching or the nature of the plaques, flakes can and will fall from your scalp. They cover your clothes, your house, and your workspace. Looking like you have dandruff or snow caught in your hair can feel embarrassing and shameful.

“The flaking everywhere – on clothes, furniture, your car.”

“Flakes at work, on my desk and chair. I’ve brought my own cleaner and rag to work for this reason. It’s embarrassing.”

“Walking, talking dandruff factory.”

“Flakes, flakes, and more flakes. My hair is dark brown, so flakes are very noticeable.”

Clothing

White flakes mean avoiding dark-colored clothing. You refrain from wearing clothes that make flakes more visible. Light colors or white are less noticeable. You miss the variety of dark colors in your wardrobe.

“Not being able to wear black and constantly brushing your shoulders off.”

“All my sheets are white, and of course, shirts.”

“Cannot wear black because of the flakes.”

Haircare

Anything that involves hair care, from haircuts to shampoo, is more challenging. You have special but inconvenient treatments to help manage the plaques. All hair choices consider the impact on the plaques.

“Scalp oil treatments – stinky, messy, time-consuming, sometimes burning, and always greasy.”

“Going for haircuts, especially if you have to find a new one.”

“Having to smell pine tar constantly.”

“Losing hair.”

Beyond hair

For several of you, scalp psoriasis migrates to other areas on your head. You have them on your face, ears, and eyebrows. The impact on your self-esteem is significant.

“I usually have mine attack my face. Eyes, ears, eyebrows, it’s awful.”

“I have it in one of my eyebrows and at the hairline on my forehead. It’s super embarrassing, and it’s hard to look people in the face when I’m talking to them. And it sucks. I have zero to no confidence in myself because of it.”

Treatments and remedies

A few of you shared what is helping you manage scalp psoriasis. Prescription, over-the-counter, and alternative, you share ideas with one another.

“There are 2 Neutrogena shampoos that help. Use them on opposite days.”

“I got a prescription from my rheumatologist for Clobetasol Propionate shampoo. It was gone in a week and is still gone! Love this!"

“Diluted apple cider vinegar rinse. Took about 2 weeks. It’s a lot cheaper than coal tar. That was 15 years ago. Continued use, and it hasn’t reappeared.”

Off the top of your heads...

Scalp psoriasis has a significant negative impact on patients’ quality of life, with more than 70% of patients reporting difficulty with daily life.¹. To those who shared, thank you. We appreciate everyone who shared the challenges of scalp psoriasis. It is not easy managing the many emotional and physical symptoms.

You have provided validation, insight, and support to members of this community. There is comfort in knowing you are not alone.