Photo Credit: Debra Mike
Debra Mike, of Marion, La., was diagnosed with plaque psoriasis at age 13, but it was only on her scalp, and so she thought of it as little more than a bad case of dandruff. She was able to manage it with topical treatments and with her mom’s careful combing. That all changed when Mike turned 21.
“I was newly married, and both of my parents went into intensive care in the hospital. It felt like everything was just crashing down around me,” recalls Mike, now 52. “It was during that stressful time that my psoriasis spread all over my body, to everywhere but the soles of my feet, and it went from being plaque psoriasis to plaque and pustular psoriasis. It was very painful, like having a deep, deep burn. It hurt to apply medicine to it, and even turning over in bed became painful. Then, when I got out of bed and stood up, the blood would circulate through my legs and the pain would be so intense I would feel like I was going to drop to my knees.”
For more than 30 years, Mike tried a wide range of topical treatments, oral and injectable medications and ultraviolet therapy to manage her psoriasis, all with some success, but at times the flares would be so bad that she would spend weeks in the hospital. Even when she wasn’t hospitalized, she was still limited in what she could do. “When my son was in high school, he was active in basketball. There were nights when I could barely get up and down the bleachers or even sit in the stands,” says Mike. “Pustular psoriasis causes blisters and would cause my clothes to stick to me. It was horrible. Still, I missed only one of his games, and that was when I was bedridden with my psoriasis. After his last game as a senior, the team honored him. I could barely walk that night, but I was there. It was an important event and I made it.”
Mike’s strong desire to be present for other family milestones drove her to search for a better treatment for her psoriasis. “I have a wonderful doctor who attends all of the conferences on psoriasis and keeps up to date on the latest treatments,” says Mike. “He would sometimes suggest I try a biologic medication, but I’m a very cautious person and I hesitated, because I knew once I started taking one I would probably have to stay on it forever.” Biologic drugs, such as etanercept (Enbrel) and adalimumab (Humira), given by injection or intravenous (IV) infusion, block psoriasis-causing actions of certain immune cells, but also raise your risk for infection. “About two years ago, I reached a turning point; I was tired of not feeling well and of missing out on things, so I decided to try Enbrel,” says Mike. “It was like a knight in shining armor had come to save me. It has cleared my skin to the point that you can barely tell I have psoriasis at all. The only side effect is that I’m a little more prone to getting colds and sinus infections now because the drug suppresses the immune system, but that’s well worth the relief I feel on a daily basis. I just try to steer clear of other people when they’re sick.”
Mike also finds relief in her nightly oatmeal baths (“I wouldn’t know what it’s like to bathe in clear water,” she laughs), sleeping on soft sheets with the highest thread count she can find and the loving support of her family, coworkers and church group. Last year she traveled to Washington, D.C., with a group formed by the National Psoriasis Foundation to ask Congress to increase federal funding for psoriasis by supporting the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act (PPARCCA). “Having psoriasis can be very depressing. It can really get you down,” says Mike. “It was helpful to hear and see other people who could understand what I was going through, and to learn so much about psoriasis. If you have psoriasis, find yourself a support group of other people who have it, too, and find a good doctor who keeps informed about psoriasis, and don’t quit. It took years, but I have found something that makes my condition tolerable. You can’t give up.”