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What’s it like to participate in a clinical trial?

People with eczema play a critical role in researching new therapies by participating in clinical trials. But what is it really like? We asked two eczema warriors to share their experiences.

What’s it like to participate in a clinical trial?

We all play an important role, especially patients, in bringing new treatments to those that need them. Research is like a relay race that scientists can only take so far, and at some point, they must hand the baton to patients to engage in clinical trials to help bring the treatment to reality. The National Eczema Association asked two NEA supporters about their first-hand experiences as participants in clinical trials. Both people are adults with eczema who have had the disease throughout their lives.

Meet Ashley

Ashley lives in California and works in the public relations industry. Now 28, her eczema began when she was two years old. In addition to her eczema, she also suffered from asthma as a child, and continues to battle severe allergies, all of which run in her family. Ashley started the clinical trial in June of 2015, and is still a participant.

Why did you participate in a clinical trial?

As a lifelong eczema sufferer, I thought I had the disease under control. I’d spent 20 plus years perfecting my excuses, “Oh, I had an allergic reaction to something” or my favorite as a kid, “My dog scratched my legs when we were playing.” But as many people know, the disease is unpredictable, and in the summer of 2014 it evolved into something that a simple excuse could no longer cover.

I began trying the standard and alternative therapies such as topical steroids, oral medication, allergy testing, trigger avoidance, various diets, bleach baths, hypnosis, acupuncture, supplements … you name it. I tried it. And was left with no tangible results. It was disheartening and this condition wasn’t getting any better. My eczema was now showing up in places on my body that it had never been before, creeping up from my legs, to my arms, shoulders, neck — and eventually, my face.

Once the condition became so severe that I was regularly missing work due to sleep deprivation, pain and overall embarrassment of how I looked, I started scouring the National Eczema Association’s website for new therapies. I discovered information about a drug that was currently in the clinical trial phase. Thanks to the “clinical trials” section on the NEA’s website, I was directed to ClinicalTrials.gov, where I inquired about the study and answered a handful of questions about my condition.

One of the questions was “How many dollar bills would it take to cover all of the eczema on your body?” Wow. I had never thought about it like that before. I quickly pulled a dollar from my purse and began counting. Let’s just say the number was higher than the amount of dollar bills in my purse.

Once I was done answering the questions and hit the “submit” button, I cried. Hard. I cried because I was hopeful that there was something out there that would allow me to get my life back, and I cried because I was scared that I would be disappointed by another medication that didn’t work.

To my surprise, within 24 hours a representative from
the participating doctor had reached out to gather more details about my condition and less than a month after my initial inquiry, I was accepted into the study.

What were the challenges?

The first challenge was dedicating the time to the study. For the first few months I was required to visit the doctor each week for blood tests, respond to survey questions about my physical and emotional health and to receive the “medication.” In the beginning, the hardest part was answering the survey questions, because I would often become emotional.

For example “On a scale of 1 to 10, how embarrassed/ashamed are you because of your eczema?” always seemed to get the water works going. I couldn’t imagine ever answering anything other than a 10. If I could have answered 15, I would have written that.

Ashley BluaSecondly, the routine blood tests were difficult because of swollen skin on my arms. There were a few times where the nurse had a difficult time finding a vein because of my inflamed, broken skin. I learned quickly to be extra hydrated before each appointment, and taking a quick walk before helped to get the blood flowing, and reduce the swelling.

The third challenge about participating in the clinical trial was not knowing if I was receiving the medication each week, every other week, or if I was on placebo. Some days my skin looked pretty good, and I was sure that I was receiving the medication, and then other days it was so severe, that I was positive I was on placebo. The process can easily mess with your mind, but the nurses and doctor were so encouraging and helped me remain hopeful by sharing other patient’s success stories.

Lastly, after many months in the first phase, the doctors allowed me to give my own injections. This was great because I didn’t have to spend time in the doctor’s office each week, and could do my injections at home. It was a challenge learning to give myself a pretty sizable shot in the stomach, but as soon as I did it once, the fear quickly diminished and I actually started feeling empowered by doing it on my own.

What were the highlights?

One highlight from this experience is that it brought
me closer to the National Eczema Association. I started volunteering, connecting with other people who have the disease, and started to feel like I wasn’t so alone in my struggle. I’m now at a place where I’m not ashamed to hide, and I am happy to answer people’s questions when they ask, “Oh honey, what did you get in to? Was it poison ivy?”

While my eczema still isn’t completely controlled, it’s in a much more tolerable place than it was a year ago. I’m still participating in the clinical trial, and have stopped worrying so much about if I’m getting the medication or not. I feel lucky to be involved and hope that if anything, all of my time, tears and blood samples will help the doctors and scientists to improve the medication so that it can help more people like me.

What advice do you have for others regarding clinical trials considering your experience?

  1. Do your research. Lean in to the resources that are out there. Use the National Eczema Association and their support groups, events and news to stay informed on your options — that’s how I learned about the study I’m in, which has been life changing (I’m no longer a 10 in regards to my embarrassment level, I get regular sleep, and now it only takes no more than three or four dollar bills to cover my eczema patches.)
  2. Be brave. Yes, there can be risks associated with being involved in a clinical trial. I can’t promise that there won’t be days where you feel like a lab rat. But just remember, you can stop at any time, and the results just might be worth the risk.
  3. Fight a Good fight. If you participate in a clinical trial, there may be multiple phases in which you will have the opportunity to participate. If you think you may
be on placebo for the first four months, don’t give up. There may be an opportunity for you to be involved
in the next phase. In my clinical trial, everyone will ultimately get the medication in the end, which gives me hope on the days I’m not feeling so great.

Meet Debbie

Debbie’s eczema started when she was a baby. It continued to be a problem as a young child, but subsided throughout her teenage and young adult years. Unfortunately, soon after turning 40 and moving to San Antonio, Debbie’s eczema returned with a vengeance. She also began suffering with seasonal allergies for the first time in her life. Her only family member with serious eczema is an aunt on her fraternal side. Debbie’s siblings have had mild bouts of eczema, but her three children, ages 21-26, have not been affected at all. She and her husband, Mike, still reside in San Antonio.

Why did you participate in a clinical trial?

My atopic dermatitis (AD) has been something I’ve dealt with all my life. I don’t remember how bad it was as a child, although my mom tells me my skin was never clear. For some reason, my disease improved during my high school, college, and childbearing years.

But a decade ago, everything changed. Shortly after our family relocated to San Antonio from Houston, my skin issues started to worsen. My yearly trips to the dermatologist turned into monthly visits, but I soon realized we were getting no- where. I spent so much money and time visiting numerous doctors, but it was to no avail.

On top of the endless amount of lotions and creams, I tried both topical and oral steroids, cyclosporine, CellCept, and phototherapy. Some of those treatments would work for a while, but nothing continued to work for me. As a happy- go-lucky individual, I struggled throughout the years trying to maintain a positive outlook. I wanted just one of those regimens to work so I could just get on with my life.

Debbie ByrnesI became frustrated with my situation. My family didn’t know what to do, and doctors seemed disinterested in helping me. While reading about eczema on the Internet one night, I discovered National Jewish Health (NJH) in Denver, Colorado.

This hospital treats children and adults with severe eczema. At that time, I decided I had to go and began my crusade with the insurance company to get my visit covered. In October 2011, I spent 8 days at NJH. When I got there I was covered head-to-toe in eczema and had reached the end of my rope.

During my visit, I underwent extensive laboratory tests, visited with a psychologist, and learned more about how to control my skin. The doctors and nurses showed me how to do wet wraps and soon thereafter I began to notice significant improvement.

It was shortly after my trip to NJH that I became involved with the National Eczema Association and began to build my support system. Both of those events were a turning point for me. Although I felt better while doing the wet wraps, I knew it wasn’t something I wanted to do for the rest of my life. The wraps felt like the best remedy I had available at the time.

When the opportunity arose to get involved in the clinical trial, I gave it a lot of thought. I understood that there may be risks involved, but I didn’t really look at it that way. Living with eczema is not easy. Chronic diseases such as this wear you down and make it hard to think about the future. I knew I wanted to try something to improve my quality of life.

My decision to participate in the clinical trial was twofold. First, I felt I had exhausted all my resources and I needed a different approach. I wanted to be part of cutting edge treatments that would give me new hope. Secondly, I’ve decided that while I find ways to cope with my AD, it may not be that easy for the younger eczema patients and their parents. I want to help find a way to get closer to a cure for them as well as me. This is my way of doing my part.

What were the challenges?

The biggest challenge for me has been missing work for the clinical trial appointments. As a teacher, I don’t have the liberty to go into work a few hours late. I’ve had to take several half-day absences to make it to the appointments. When I started the trial a year ago, the appointments were weekly visits. Eventually I got to where I was going in monthly. No matter how many appointments it required, I was determined to make it work. The benefits of the trial definitely outweigh this challenge.

Another challenging part for me in the beginning was dealing with other illnesses while I’m participating in the trial. Most of the times I go in for my clinic appointments, the nurses draw blood for the trial. I became fearful that
if I took certain medications, such as antihistamines for my allergies, it would affect my blood work in a negative way.

If possible, I would refrain from taking other medications so it wouldn’t jeopardize my participation in the trial. Every time I go to a clinic appointment, I am required to tell the nurses every change I’ve had in my health and how I was treated for it.

What were the highlights?

Debbie Byrnes 2When I started this trial in January 2015, I understood there was a chance I’d receive the placebo. I thought about that all the time. I remember thinking to myself, “What if I can’t tell what I’m getting?” “How will I cope if it is the placebo?” “How long would it be before I’d notice any improvement?” “Could I handle the fact that I’d never really know what I got?”

Even though I consider myself a low-key person, the anticipation was nerve wracking. I decided to focus on the positive thoughts and keep the hope.

Just five days after receiving my first treatment, I felt different. I will never forget the feeling I had that particular morning when I woke up. The feeling came from inside my body, not from my skin. My body felt at ease and relaxed.
I have yet to find the right words to describe it, but I knew in my heart that something exciting was happening.

That feeling continued and I began to heal. My skin looked better than it ever has. The itching stopped and
I began sleeping through the night. I didn’t dread showers anymore, because my skin didn’t turn bright red from the water. My skin became less dry and required minimal work. I no longer needed all the creams, ointments, and oral medication.

My monotonous skincare routine ended and my overall outlook on life changed. For the first time in a decade, I felt and looked normal. The medication I received through the trial didn’t cure me, but I no longer felt like an eczema patient. For me it was almost 100% gone.

What advice do you have for others regarding clinical trials considering your experience?

I would tell others who want to participate in a clinical trial to take charge of your own destiny. Do research on the available trials and decide which one is right for you. Once you make that determination, be persistent on how you get involved. Find out which doctors in your area are clinical trial sites, and call them often.

If possible, stop by the office and talk with someone in person. I got on the list at three different offices waiting for the trial to begin. I called each site a couple times a week. Pursue all avenues to get into a trial, and don’t give up. It could change your life in ways you can’t even imagine.

Clinical trials for eczema can change your life

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