Living with Pustular Psoriasis: Susan's Story

Psoriasis, a skin condition that typically leads to scaly, inflamed areas on the elbows and knees, can come in several different forms. Susan Jones, 61, a sales representative in Albuquerque, N.M., has a form of psoriasis called palmoplantar pustular psoriasis. When it flares up, she develops painful blisters on the palms of her hands and the soles of her feet. This type of pustular psoriasis poses obvious challenges — it is difficult to walk or handle objects during flares.

Jones was diagnosed with pustular psoriasis about 15 years ago. “I had been scuba diving and had scraped my right hand on some coral,” Jones recalls. “Shortly after, blisters were growing on my palm.” Jones saw several doctors, but no one knew what it was. One doctor wrongly theorized that the blisters might have resulted from contact with toxins released by the coral.

Sometime later, Jones found a few photos of people with pustular psoriasis on the Internet. That’s when she realized that her symptoms might be due to this rare form of the disease. By then, blisters had spread to the heel of her right foot and she couldn’t walk. A new doctor confirmed that she had pustular psoriasis. Soon after, she lost her job and her health insurance, and could not get psoriasis medication. This was an extremely difficult time for her.

Dealing With a Pustular Psoriasis Diagnosis

Jones recalls that her reaction to being diagnosed with pustular psoriasis was actually relief. “I was glad to find out what it was, but not glad to learn that it’s a very difficult form of psoriasis to treat.”

In particular, Jones was relieved to learn that pustular psoriasis wasn’t an illness that could be transmitted to others. At one point before the diagnosis, she had even wondered if her condition was leprosy. “When I didn’t know what it was, I had been concerned about it being contagious,” says Jones. “I didn’t want my husband or daughter to get it.”

Her family has been a tremendous help to her during her flares, Jones notes. “I couldn’t vacuum because I couldn’t hold on to the vacuum cleaner,” she recalls. “I couldn’t wear shoes and walking was like walking on ground glass.” Her daughter, who was a teenager at the time, did the cooking. “My family did just about everything,” says Jones.

For Jones, the biggest challenge during her pustular psoriasis flares was not being able to walk. “I can remember back then, thinking, ‘If I’m ever able to get through this, all I want to do is wear a pair of cute, sexy little sandals,’” says Jones. “I promised myself I would never complain about walking or going to the gym.”

Finally, a Psoriasis Medication That Worked for Her

Fortunately, in 2009, she discovered Stelara (ustekinumab), a then-new psoriasis medication that has been effective in treating her pustular psoriasis. “I think I’ve taken every drug there is,” Jones marvels.

Before she found the right medications, Jones slept with plastic bags on her hands and feet, which were covered with ointment. “It helped manage my discomfort.”

Like many people with psoriasis, she and her doctor had to try a number of different medications until they found the psoriasis treatment that was best for her. The road to psoriasis symptom management has not been an easy one for Jones, and this last stop was just as bumpy. “My insurance company wasn’t going to pay for the medication I needed,” she remembers. At a whopping $5,000 for each injection, which patients get every three months, Jones wasn’t able to afford this psoriasis medication. But with the help of another palmoplantar pustular psoriasis patient she met online through a National Psoriasis Foundation Web site forum, she got the insurance company to pay for her psoriasis treatments. Jones is happy to report that she’s “been free and clear for almost three years now.” And those sexy sandals? “I’ve worn them, and with red toenail polish,” she says triumphantly.

Daily Care for Palmoplantar Pustular Psoriasis

To maintain her overall health and to further offset pustular psoriasis symptoms, Jones tries to minimize stress. “I think stress is a real big part of it,” she says. She makes an effort to do activities she really enjoys. “I garden all the time, and I just started to raise chickens.”

Jones also tries to exercise when she can: “I can’t always work out even though it helps. When it hurt to walk, I could use a stair climber. I used that except when it was really bad.”

In addition, Jones takes vitamins, including a multivitamin and a fish oil supplement, which she believes is good for the skin. “I also use Aquaphor and Vaseline to keep my skin moisturized,” says Jones. “I’ve tried things like a gluten-free diet, but it had no effect. I even tried sticking my feet in Clorox, which I read about somewhere. And I’ve tried Dead Sea salt. Nothing worked until I got on the right medication.”

What Jones Wishes People Knew About Palmoplantar Pustular Psoriasis

Read Howard Chang’s Psoriasis Blog.

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