I’ve nearly given up on finding the right psoriasis treatment more times than I can remember. Living with psoriasis for over 45 years gives you lots of opportunities to try just about everything.
It’s easy to romanticize the process and imagine it as one full of hope that the next treatment will be the one that cures all. In reality, it can be a long, painful, and discouraging experience trying to discover a safe and effective treatment.
This summer I marked my sixth year of taking Skyrizi (risankizumab), a biologic injection approved in 2019 to treat moderate-to-severe plaque psoriasis in adults. I didn’t participate in the Skyrizi clinical trials, but my dermatologist prescribed it almost immediately after it received U.S. Food and Drug Administration (FDA) approval.
Starting Skyrizi meant my previous treatment had failed. I documented the transition from Tremfya (guselkumab) to Skyrizi on my personal website.
As I looked back at that switch, I felt a flood of emotions recalling the hope I had put into that medication and the disappointment I felt about its subsequent failure.
The number of biologics I’ve tried for psoriasis is burned in my brain: six.
It Took 6 Biologics to Find 1 That’s Worked Consistently
For my first biologic, Amevive (alefacept), I traveled to the oncology infusion center at the hospital to have it administered intravenously. The excitement of trying the first biologic approved for psoriasis, in 2003, wore off quickly when it adversely affected my white blood cell counts.
Then I switched to Enbrel (etanercept) but needed another drug, cyclosporine, in combination to control my psoriasis. Cyclosporine, a systemic treatment taken orally, caused hypertension and concerns for my kidneys. When I stopped cyclosporine, my psoriasis flared horribly. I also endured a number of infections on that combination of medications.
Humira (adalimumab) worked well at first, but a horrible rash developed after two months.
Stelara (ustekinumab), which I used for over six months, did not provide much relief despite my regular visits to the dermatology clinic to have the nurse inject it.
Tremfya came next, and my skin began to break out just short of two years on it.
At a dermatology appointment in June 2019, my doctor, Christie Carroll, MD, decided to switch me from Tremfya to Skyrizi. On that day I wrote, “I didn’t expect to start Skyrizi so quickly, and I’m still trying to figure out how I feel about trying my 6th (!) biologic for psoriasis since 2003.”
If history were to repeat itself, Skyrizi wouldn’t work, or I’d have an adverse side effect to make me stop taking it. I’m glad that past performance did not dictate future results.
What Kept Me Motivated to Keep Trying
As a track and cross-country runner in high school, I learned to push through discomfort. Sometimes I could place in the top three in a race and score points for my team. Other times I reached for a personal best time. On bad days I pushed just to finish. Whatever the situation, I made it to the finish line.
I came to see my psoriasis treatments analogously to running.
In my early years living with psoriasis, biologics didn’t exist as a treatment option. I struggled with far too much inflammation on my skin while taking treatments that could damage internal organs. For years I took a monthly blood test to check for potential developing health issues from them.
The frustration with treatments made me want to stop them altogether and withdraw from life. In those low moments, I recalled the discomfort of running in high school. I persisted by looking forward to milestones as if they were a finish line: college graduation, our wedding day, arrival of our first child, finishing graduate school, and beginning my career.
Imagining the future helped me get through the painful present. My faith sustained me in dark valleys. Psoriasis research advanced quickly with a stream of new treatments to try. I took solace in knowing that life doesn’t stand still. If I kept moving, things would get better.
In a sense, I had to outrun discouragement, depression, and setbacks until psoriasis research and treatments could catch up. Finally, in the summer of 2019, they did.
Still Running the Race With Psoriasis
Life with psoriasis is far from over. At my last dermatologist appointment, Dr. Carroll noticed a few psoriasis spots breaking out on my back. She said not to worry. Of course, I immediately wondered if Skyrizi is losing effectiveness for me. All good things come to an end, and this treatment has been the best so far.
I’m now researching what new treatments I could try next if needed. It’s as if I’m still on the cross-country trail, taking the switchbacks on the back side of the hill in stride after a long uphill climb. I know the finish line is out there, but I’ll have to endure more uneasiness before reaching it.
I envy those with psoriasis who find a great treatment from the time they are diagnosed. Everyone’s treatment journey is truly unique to them. My winding treatment trail with pills, ointments, and six biologics has taught me these life lessons: not to give up hope in what’s to come, and find inspiration in the ordinary like running.
This summer I wondered what would have happened if I had given up after Tremfya failed. There’s no way to know how well managed my psoriasis would have been. However, over the past six years, I’ve experienced the least amount of psoriasis inflammation on my skin since childhood. I’m glad I was open to trying one more treatment.
Are You Feeling Pessimistic?
Is there something you’ve thought about trying for your psoriasis, but feel pessimistic about its prospects? Talk it over with your healthcare providers and others who support you. It might just be what you need.
