Finding My Voice Through My Struggle With Psoriasis
Six years ago, I gave my husband an out. I told him he could divorce me if he wanted to. My life was becoming a medical roller coaster, and I wasn’t sure he was up for the ride.
What I thought was a casual case of poison ivy on my right leg, turned into a rash that wouldn’t go away. After a few weeks, I decided it was time to see my doctor, who immediately recognized it as psoriasis, and referred me to a dermatologist. That was 13 years ago, and only now, my rough roller coaster is starting to smooth out.
After my first trip to the dermatologist, and countless heavy, sticky, clothes-ruining ointments later, my psoriasis still wasn’t getting any better. In fact, it was getting progressively worse, with red, itchy plaques covering about 80% of my body -- legs, arms, trunk, scalp, everything (except my face, thankfully). My skin cracked, bled, and itched enough to make me want to dig my nails into the plaques just to spite them. I couldn’t sleep. Heat and sweat created an unbearable burning sensation, and as if that wasn’t enough, I was diagnosed with psoriatic arthritis, with bad lower back and knee pain.
I was taking methotrexate once a week, which helped clear my skin a little bit, but the side effects were almost worse than the psoriasis. I’d take the pill, suffer through nausea, headaches and fatigue for almost the entire week, and then it was time to take the pill again.
I was discouraged to say the least.
Rock bottom came when my condition failed to improve after taking a highly recommended biologic. This particular drug, a tumor necrosis factor-alpha (TNF-alpha) inhibitor, works for many people, and I was hoping it would be my wonder drug. I injected the medication every other week for six months, and my hands cleared up, but not much else. My doctor agreed -- it wasn’t working.
My desperation led me to enroll in a clinical trial. My spirits rose temporarily as the pustules went from covering 80% of my body to 40%; however, once the trial was done, the psoriasis came back with a vengeance.
I was depressed. I was anxious. I felt self-conscious. Thankfully, when I lacked hope, my husband’s support brought me out of the dark. I thought, if I have to live with this disease, then it’s time for me to make a difference and help other people with psoriasis. I got involved with the National Psoriasis Foundation (NPF). I’ve spoken on several patient panels and I even participate in NPF’s mentoring program as a mentor for the newly diagnosed. I’ve learned so much -- from the experts, but also from others with psoriasis, who are still, like me, navigating the twists and turns of the disease.
I’m happy to report that I may have finally found my wonder drug. Less than three months ago, I started on a new biologic, an interleukin-12/23 (IL-12 and IL-23) blocker, which operates on two of the inflammatory pathways involved in psoriasis. The drug is administered by my doctor every three months after two initial shots. So far, having just had the initial shots, I’ve seen my skin improve from being over 70% covered, to being about 45% covered. The psoriasis is barely visible on my arms, hands and trunk. It’s even dramatically improved my psoriatic arthritis pain.
Now, I look at my psoriasis as a blessing. While psoriasis stripped me of self-confidence and happiness, it taught me to never give up, to never stop fighting. It gave me a voice.
My best advice for others going through a similar situation is if the first treatment doesn’t work, or the second, third, or fourth, keep reading, keep talking to doctors, keep persevering. Learn as much as you can about the condition. A support system, whether it’s in the form of your family, an organization, or a virtual community is more important than I can say. Don’t let shame, insecurity, or depression discourage you from discovering what you deserve -- a treatment that works for you.
Vickie Wilkerson, 46, lives in Shreveport, LA with her husband. She has been living with moderate to severe psoriasis for 13 years.
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