Kristin Donahue wanted to know what lay beneath her psoriasis. She headed to the National Institutes of Health to find out.
"How were you burned?" the woman asked.
Burned? Lost in the distraction of a tabloid magazine at the grocery checkout, I turned to look behind me to see who the woman was talking to. She was talking to me. Her eyes met mine and drifted to my forehead, ears, cheeks and neck — I watched her take it all in. It was summer, it was hot, and I had braved wearing a tank dress. A hot flush spread over my neck and cheeks, jawline and forehead — the plaques already raw and red from a new flare. It hadn't occurred to me that I might look like I'd been burned.
I've lived with psoriasis since I was a child, so this wasn't the first time a stranger had inquired about my skin. Throughout my life, I've been asked if I'm contagious, told that my hair could not be colored because of scalp psoriasis and that I could not swim in a pool. Over a lifetime, psoriasis creates — literally and metaphorically — a thick skin. But this new flare consumed most of my face, neck and arms — the skin most visible — and was eliciting a new type of attention.
Like many people diagnosed with psoriasis or psoriatic arthritis at a young age, I've tried various treatments. I've slathered on topicals and undergone narrow-band UVB therapy. I've considered going on a systemic drug and once held the prescription for methotrexate in my hand. But when the dermatologist suggested that I get my tubes tied or undergo some other form of permanent birth control, and that, on the drug, I would need periodic liver biopsies, I knew I couldn't fill the prescription. I was only 28 years old.
I left that appointment concluding that the disease posed fewer risks than the medication. Then the UVB treatments stopped working and actually appeared to be worsening the psoriasis on my eyelids and neck.
About the same time, new medical studies showed that people with psoriasis often are at increased risks for cancer, stroke and heart disease. When I read an article in the Spring 2012 issue of Psoriasis Advance about Dr. Nehal N. Mehta, a preventive and nuclear cardiologist, and his research on internal inflammation and psoriasis, I wondered: What would the consequences be of not treating my psoriasis more aggressively?
In the summer of 2012, Mehta — director of the Inflammatory Risk Clinic within Preventive Cardiology at the University of Pennsylvania — received two grants totaling $7 million from the National Institutes of Health (NIH) to further his studies linking vascular inflammation and psoriasis. Of that grant money, $3.8 million allows him to work with fellow University of Pennsylvania researcher Dr. Joel Gelfand to study the effects of psoriasis drugs on diseases of the blood vessels.
The remainder allows him to work at the National Heart, Lung and Blood Institute in Bethesda, Md., on an observational study called the Psoriasis, Atherosclerosis and Cardiometabolic Disease Initiative (PACI), which is designed to further understanding of the relationship between psoriasis inflammation and vascular disease. PACI builds on the work Mehta did with a 2010 National Psoriasis Foundation $50,000 Discovery Grant. That grant funded a pilot study using a sophisticated imaging technique to identify if inflammation associated with psoriasis could be detected in areas other than the skin, such as blood vessels, joints and the liver, and led to the NIH grant.
The imaging technique, called fluorodeoxyglucose positron emission tomography-computed tomography, or FDG-PET/CT, revealed that all study participants with plaque coverage of more than 10 percent of their body surface area had previously unknown internal inflammation in the joints, liver and blood vessels. Building upon this observation, PACI will observe patients over four years to further understand the impact of the inflammation of ongoing psoriasis and its treatment over time. In addition, the study aims to understand how metabolism might be affected by skin inflammation, and includes skin and body fat tissue testing.
"Our goal is to know as much information as we can, to understand if, compared to mild psoriasis, severe psoriasis increases blood vessel disease," Mehta said. "We are also hoping to understand the effect of acute worsening (a flare) on the body."
As a preventive cardiologist, Mehta is researching how and why inflammation is associated with heart disease and diabetes. In previous studies, he found that obesity, like psoriasis, is associated with low-grade chronic inflammation. His work has also shown that people with psoriasis, without other cardiovascular disease risk factors, are at increased risk of cardiovascular disease.
Although it is early in the study, Mehta said, "We have observed that inflammation in psoriasis patients extends into the blood vessel wall, as well as into fat tissue. This may explain why there is an increased risk of diabetes and obesity associated with psoriasis, but it is too early to draw any conclusions yet."
The study experience
I had avoided systemic and biologic drugs for years because I feared the side effects, but now evidence was showing there could be potential consequences associated with failing to treat psoriasis.
When I read about Mehta's study in Psoriasis Advance last year, I was more than 10 percent covered in lesions. I wanted to know if I, too, was at risk for cardiovascular disease, stroke or cancer, and if I had undetected internal inflammation.
I met Mehta last September at the National Institutes of Health as a participant in PACI. During our first visit, we talked extensively about the history of my disease, how long I've had it, where I've had it, treatments I've tried and how it has affected my life. It was the first time I felt as if a doctor was really trying to understand the significance of what it means to live with psoriasis, a disease that reaches far beyond the cosmetic implications.
I also met with Amy Chi, a clinical research nurse, to go over the testing and appointment itinerary. This first visit was to establish a baseline to compare against when my disease flared. In medical terms, a flare constitutes an increase of psoriasis to more than 10 percent of one's body, or, if already covered at least 10 percent, a 125 percent increase of coverage. Staff took blood samples and ran tests. I had a physical exam. I met with a dermatologist, a nutritionist and Mehta. Patients with symptoms of joint disease can also meet with a rheumatologist.
After looking over my blood work and physical exam results, Mehta pronounced me in good health. However, the extent of the disease's effect on my body wouldn't be known until imaging determined whether internal inflammation was present. My blood work revealed no increased markers of inflammation, such as C-reactive protein, and my organs and joints showed no signs of inflammation. However, my scans did show slightly elevated levels of vascular inflammation compared to my age group.
At this early point in the study, Mehta cannot provide any conclusions as to why I have slight vascular inflammation. But with a focus on a healthy lifestyle and management of my psoriasis — specifically new flares — I can prevent it from worsening and perhaps even improve the condition. With research linking psoriasis and conditions such as diabetes and heart disease, I am often overwhelmed not only by my psoriasis but also by the risks it may pose for my future health.
Mehta said that this type of inflammation is reversible. He suggested maintaining an active lifestyle, which includes daily activity of 30 minutes, losing weight so that my body mass index is lower than 25 and watching my diet, specifically the intake of fat, cholesterol and complex carbohydrates.
Over the course of my participation in PACI, I will return to the NIH if my disease worsens acutely and for repeat imaging at one year and four years. In addition, Mehta is paying close attention to whether flares, rather than a stable disease, worsen risk factors for diabetes and heart disease.
The types of imaging and testing used in PACI are expensive and not necessary for every patient, Mehta said. They are currently used in a research setting to better understand how systemic inflammation may affect blood vessels and organs. From the study's early findings, patients with psoriasis should understand that it is important for people with psoriasis and psoriatic arthritis to learn about their disease and pay attention to how it affects them, and to maintain a healthy lifestyle that includes daily exercise, a low-cholesterol diet and weight management. Taking these steps can help prevent, lessen and even reverse vascular inflammation.
Moving forward, Mehta will use information gathered from PACI to facilitate research that looks at whether treating severe psoriasis improves internal inflammation. This is the focus of the ongoing clinical trial with Gelfand at the University of Pennsylvania, which is currently enrolling at four sites in the United States.
For someone like me who has always taken a conservative approach to treating my psoriasis, the results of Mehta's research may be significant. I know that I need to be cognizant of my new flares and reduce my systemic inflammation with an active lifestyle and healthy diet — sage advice for all.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.