When Stephanie (Steph) Keever was a teenager, she began noticing deep ridges and pits in her fingernails. It was a precursor to the psoriasis she would develop later in life.
Today, at age 47, Keever navigates the symptoms of both inverse and plaque psoriasis flares, as well as the beginnings of psoriatic arthritis. That makes her one of the more than 7.5 million Americans living with this immune-mediated disease.
There’s no cure for psoriasis, but according to the National Psoriasis Foundation, there are now more effective treatments than ever before.
To help manage her symptoms, Keever has explored countless topical products, oral and injectable medications, diet and lifestyle changes, and alternative treatments. Some have been helpful, and others less so.
Still, her seasoned advice to anyone who was recently diagnosed, or who is currently managing flares, is simple: “Try everything! Just because someone says it doesn’t work for them, it doesn’t mean it won’t work for you.”
Twelve years ago, when Keever’s daughter was 2, she found a small plaque patch on her back, by her waistline. Within the year, she had developed plaques on her elbow, knee, stomach, and legs.
“Psoriasis is hereditary,” she explains. “My father has it a little on his head and elbow, and my brother has a small patch on his knee once in a while. My grandfather also had psoriasis. But nobody in the family has it covering their body like I do.”
Psoriasis can appear anywhere on the body, with plaques presenting as a few small patches or across larger areas. In Keever’s case, she has inverse psoriasis beneath her breasts, along her bikini line, and in her genital area.
“The skin rips with this kind of psoriasis,” she explains. “I found out I had [inverse psoriasis] when I was exercising a lot and couldn’t figure out why my groin was burning.”
After a trip to the OB, it was decided that she shouldn’t walk, bike, or move much at all during a flare. Now, when she’s experiencing a flare, she rests rather than moving around a lot.
Keever also has plaque psoriasis, known as psoriasis vulgaris, on her head, ears, on her face from her eyebrows up into the hairline, neck, arms, legs, and trunk areas.
“It’s like having a constant flaking scab that snags on clothes,” she says. “Sometimes it’s just white with scales. Other times, when it’s ‘pissed,’ as we so lovingly call it, it’s beet red or purplish in color. The constant flaking of the scab-like skin means the air is always touching the new skin underneath, and it stings like a paper cut.”
When a patch of psoriasis grows, she describes it as a hot poker burning the skin.
Scientists still aren’t sure what causes psoriasis, but they know that both the immune system and genetics play a role. Triggers vary from one person to the next, but often include:
- stress
- injuries to the skin
- weather
Unless actively taking an immunosuppressant drug, “I think I’m always in a constant state of flare-ups simply caused by just living,” Keever says. “There isn’t always a rhyme or reason for the flare-up. I do notice I have more burning, pain, and an increase in the size of the patches when I’m stressed, but this also happens when nothing noticeably stressful is going on.”
Finding a way to manage her stress motivated Keever to try Reiki as a way to relax the central nervous system. But, she says, it’s not cheap — nor is it covered by her insurance.
Reiki is just one of many, many management methods she’s explored.
“I’ve had psoriasis for so long, I forget about all the treatments I’ve tried,” she says.
Topicals
There are a number of prescription topical products marketed as treatments for managing symptoms of psoriasis, and it’s fair to say Keever has tried almost all of them.
“I’ve tried different salicylic acid [products] and corticosteroids, including Clobetasol, and various ointments, creams, foams, and gels. My husband even found a psoriasis cream at the local Dollar Tree. It didn’t help me, but it helped my dad.”
She says that the topical that seems most helpful is Taclonex Scalp, a suspension of betamethasone, a corticosteroid, and calcipotriene (synthetic vitamin D).
“However,” Keever says, “it costs $1,000 to $2,000 for 60 grams of liquid. It’s absolutely ridiculous for these medications to cost so much.”
Immunosuppressants
When the psoriasis began covering more of her body, including the upper part of her face, Keever’s Stanford dermatologist recommended immunosuppressants.
She’s tried several, but she finds the many side effects — irritable bowel syndrome (IBS), lowered immune system, and greater risk of some cancers — a source of concern.
Keever has also explored a mix of immunosuppressant prescription medications, both oral and injectable, including:
- Otezla
- Taltz
- Skyrizi
- Stelara
- Cosentyx
“The shots can be painful, causing burning at the injection site, along with nausea, dizziness, headaches, etc.,” she shares. “Unfortunately, when you stop one of these meds and then try to start up again, they don’t always work as well.”
Efficacy is important, but for many people managing their psoriasis, cost cannot be overlooked.
“Most of these expensive drugs have discount cards,” Keever says. “I’m able to get them for a fraction of the cost, as long as I have commercial insurance and not government insurance, like Medicare/Medicaid. Otherwise, they would be cost prohibitive.”
Laser treatments
Keever also shares that she was just approved to begin XTRAC excimer laser treatments.
It takes multiple treatments to begin seeing effects, and her deductible is $80 per treatment, so she’s not sure if she’s going to proceed.
Other approaches
When she finds her psoriasis is just too painful, Keever takes nerve-blocking pain medications or narcotics.
In addition to medications and Reiki for stress, she’s also tried moderating her diet.
“I tried going gluten-free and following the autoimmune protocol (AIP) diet. Unfortunately, neither have proven to be helpful with the psoriasis.”
She’s explored phototherapy, tried essential oils to no avail, and cycled through different soaps and shampoos in an effort to find something she can comfortably use.
“I found that [the Dove Sensitive Skin line] actually works great and doesn’t dry out my skin further,” she shares. “Coal tar shampoo works OK, but it strips the hair of necessary oils and smells awful.”
Keever acknowledges that it doesn’t always help to hear that you aren’t alone, and that others are going through the same thing you are. “You just want the pain and embarrassment to go away,” she explains.
Still, as someone experiencing psoriasis first-hand, she has specific advice:
- Keep the plaque as moist as possible with ointments and lotions, so they don’t hurt as much. Sometimes, she covers the ointment with a large bandage to help keep the area moist.
- Avoid lotions and foams that have alcohol. These can burn.
- Be careful with ointments. They can ruin clothing and burn when the skin is raw and new from descaling.
- Use icepacks to soothe the burning sensation.
- Try keeping your hair short, if you like that style. This has helped Keever’s father.
- Keep up with the treatments — ointments, lotions, and injections — as much as you can to avoid making your psoriasis worse.
Twelve years in, Keever has also developed a pragmatic, if weary, attitude.
“This isn’t a disease for the [self-conscious],” she says, “as it’s difficult to wear long sleeves, pants, and hair down in the summer. Generally, it’s difficult to hide your hands, face, ears, and neck.”
She’s also admirably positive: “There’s no cure for psoriasis or a magic pill to make it all go away, so I just have to remember this is just a hiccup or speed bump in life. Sometimes, it’s simply about perspective.”
While Keever encourages anyone navigating the symptoms of psoriasis to try everything they can, she does want people to be aware of the expense.
“The cost of treating this disease is astronomical,” she says. “From Reiki sessions to all the different topical ointments, lotions, foams, shampoos, immunosuppressant injections, and emotional toll it takes on you, your pocketbook and sanity are compromised.”
Many of the medications she uses are available by prescription only. Prices vary, depending on whether you have medical insurance. These medications include:
- Taclonex Scalp and ointment
- Otezla
- Taltz
- Skyrizi
- Stelara
- Cosentyx
- clobetasol
- XTRAC excimer laser treatments
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