In school I became a straight “A” student after my mom gave me an earful about my grades. I received a less than stellar fourth grade report card, which my parents promptly put on the refrigerator as a badge of shame.
Then there was the dreaded parent-teacher conference. Let’s just say mom grabbed my ear while dragging me back to the car in the school parking lot afterwards. That unfortunate incident spurred me to promptly get on the achievement path.
A Type-A personality emerged in fifth grade that drove me to work tirelessly toward my goals and finish well before deadlines. Whether by carrot or by stick, my motivation to keep working served to get me through years of school and then serving the church as a minister.
Sadly, though, I get a resounding “F” for resting.
This post, and my travel to the event, was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.
I rushed into the Whitby Hotel in New York City feeling late to The Science of Skin educational event. The stress of navigating a new city amped up my heart rate. I had traveled across the country and didn’t want to miss a beat.
As I descended the stairs to The Reading Room, I felt transported to a familiar space. I first saw a picture of myself on a poster with a quotation about why I started blogging about psoriasis. Walking in further, I greeted new and old friends.
Indeed, The Reading Room became a special place for those few hours. I might characterize it as a safe place, but it was more than that. I not only learned from doctors and heard fellow patients transparently share their experiences with chronic skin conditions, but I also reflected on my own psoriasis journey.
A Student’s Attitude Toward Psoriasis
Since my diagnosis, my understanding of psoriasis has grown as I have taken the initiative to learn and read about the disease, its causes and the treatment landscape. I don’t claim to know it all, as information and treatments continue to evolve, so I always look forward to opportunities to be a student of psoriasis, which this event afforded.
During the panel discussion about psoriasis, I recalled instances of people who told me flatly that psoriasis is just a rash. Over 40 years of living with this disease, I’ve seen the science prove them wrong. Now we know that psoriasis is a chronic disease linked to many factors, including an overactive immune system.
When I see those red plaques and lesions on my skin, I now know I’m seeing inflammation that is forcing my body to produce skin cells at a much faster rate than normal. Instead of a 28-day skin cycle, psoriatic skin produces new skin cells in a four to five-day cycle. That faster skin production leads to thickening of the skin as cells build up on the surface. Those skin cells then become the flaky scales and plaques that get all over my bedsheets, clothes, and floor.
In addition to discussing the science behind psoriasis, the dermatologists at the event also addressed other areas of psoriasis research. One even talked about how knowledge gained from developing psoriasis treatments is now helping researchers to develop treatments for other conditions.
Coming to Terms, Again, With Psoriasis’s Impact on My Life
The Science of Skin event turned out to be more than just a scientific presentation of psoriasis and other chronic skin conditions, but rather, a look at the whole person. The discussions helped me realize that I’m not always as willing to acknowledge the deep impact of the disease on my daily life as I think I am.
I usually wonder if my skin will worsen with the stress of travel. This time I did feel a bit of skin discomfort, but when people asked how I was doing I quickly said “fine.” When speakers started talking about the isolation and shame that some living with chronic skin conditions can experience, I felt challenged once again to stop hiding the impact of psoriasis on my life.
A survey conducted by the National Psoriasis Foundation that found 87% of psoriasis patients feel helpless and embarrassed, and 88% believe that psoriasis affects their overall emotional wellbeing, really resonated with me. Psoriasis has never been just skin deep for me, and now I have stats to back it up. The presenters emphasized the physical, psychological, emotional, and social impacts that can come with a visible skin condition—all of which I can attest to in my own experience.
At the same time, I was glad to hear one dermatologist’s observation of how the psoriasis patient community’s mood has turned more positive as more effective treatments have become available. I’ve experienced that transformation in my life, and the last decade has been the most productive for my advocacy, work, and education. I didn’t settle for “good enough” and asked for more when it came to my psoriasis care.
As TheScience of Skin event ended, I looked back at The Reading Room one last time. The event marked a moment where I felt hope again for people living with psoriasis. I confidently stepped back into the city feeling that I could move forward in my journey with psoriasis as I turned toward home.
Disclosure: This post, and my travel to the event, was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.
I’ve experienced a steady anxiety about Skyrizi the last few weeks. My expectations changed after I injected the second dose at week 4. With the next injection at 16 weeks, I figured the medication already in me must do the work.
A graph from the Skyrizi website show the percentage of those taking the medication reaching ninety percent improvement tapering off by week 16. For once I want to be part of that three out of four who get fantastic results from a psoriasis medication.
I Want It Gone Now
In my head I know I need to practice patience when it comes
to psoriasis. Few medications work as quickly and effectively as I want. I want
something like a Tylenol or Benadryl that starts working within the hour. What
I typically get with these drugs is more waiting with less than stellar results
at the end of months of waiting.
I don’t easily admit my impatience. I see myself as a veteran of these psoriasis wars—I’ve seen it all, and nothing surprises me. Expect little. Set the bar low to the ground. Manage expectations. All these platitudes mean well, but do little to curb the appetite that’s grown for something, anything, to truly knock down my psoriasis. The fact remains I’m no different than anybody with a severe chronic condition—I want it gone now.
Alas, it just doesn’t work that way (if it works at all). I want the rabbit, but many treatments act more like the turtle. Slow and steady wins the race, Aesop’s fable declares. But what if the turtle never makes it to the finish line?
Here are some photos comparing when I started Skyrizi and about six weeks later:
I can’t believe I finished my third week of taking Skyrizi (Risankizumab). In the coming week I take my second dose. This dose is a loading dose administered at week four. The dosing moves into every twelve weeks thereafter.
The biggest questions I have when I take a new medication are if it will work, when it will start working, and will I have side effects. See below for my updated impressions on these three questions.
Will Skyrizi Work to Clear My Psoriasis?
This is a crystal ball question to be determined in the coming weeks. But if you make me give an answer of what I predict I’ll tend to take the pessimistic view. When a drug claims that X out of 10 people who took it during clinical trials reached PASI 75 or 90, or even cleared, I’m skeptical I would be one of them.
I’m usually the X out of ten that did not reach any notable level of psoriasis clearance. I know, I know. Past results do not predict future outcomes. Too many variables must play out before making any conclusions. My body changes over time. New medications have different mechanisms of action in my body than others. But I’ve faced disappointment after weeks and months of waiting on a new drug enough times to not get my hopes up.
In clinical trials, 3 out of 4 people achieved 90% clearer skin at four months, after just two doses
Of those, nearly 9 out of 10 sustained 90% clearer skin through one year
Also, 8 out of 10 people achieved clear or almost clear skin at four months, after just two doses.
Number 1 and 3 sound like the same results told in two different ways. Number 2 says that those who did respond sustained it after a year. Okay, awesome numbers to be sure. I just hope I’m not the 1 out of 4 or 10 who doesn’t get a great response.