Andrea’s Story

Clinical Trial Story

In 2014, I was on NBC’s The Biggest Loser. I was completely healthy before going to the show, but I was extremely obese. I was unhappy and had zero self-worth, but by the time our season finale aired in January 2015, I shed almost 100 pounds and felt amazing! My self-confidence was through the roof and for the first time in over 20 years, I was completely happy and healthy. I couldn’t ask for a more supportive husband, son, and family. After the show, I continued to work out six days a week and ate extremely healthy food. In June 2015, I completed my first triathlon and felt on top of the world. I kept my weight off for over a year—not an easy task! But life came crashing down in May of 2016.

My husband and I came home from a nice dinner out. About 2:00 in the morning, I became very ill. I thought it must be food poisoning because I had all the symptoms. A couple of days went by, and I was still sick, so I assumed it must be the flu. After a week sick, I landed in the emergency room. I found out that I was suffering from a severe case of ulcerative colitis/pancolitis, a disease I’d never heard of in my life. I was uneducated and scared and when they told me there was no cure, I started Googling and learning as much as I could.

Like many, my UC came out of nowhere. My doctor said he wanted to attack the disease with a strong medication, a biologic. I never imagined how much my life would have changed in such a short time. I was put on high doses of steroids and immediately gained weight. I was horrified. I wasn’t allowed to eat salads, anything with fiber, fresh fruits or veggies. I couldn’t even walk to the end of the sidewalk. I was confined to the walls of my house and immediately became sad, depressed, and alone.

I remember the day I started the biologic. After reading about the positives and negatives, I was petrified. Everyone told me to quit “Googling” everything. They were right! My husband came to my first infusion and sat with me for four hours. Everything went perfectly and within a day, I felt so much better. That was short lived. I stayed on the biologic for eight months. During that time, the doctor doubled and tripled my doses and infusions were every four-five weeks. I started having severe joint problems and I could barely get out of bed. My doctor couldn’t tell me why. It was time to make a change, so I made an appointment at the University of Michigan, a decision that changed my life.

My new doctor immediately performed a colonoscopy and other tests. I discovered I had developed medically induced lupus as my body formed antibodies to the biologic. My treatment options were very limited, so my doctor suggested a clinical trial. And that trial changed my life.

Like many, I was new to the idea of participating in a clinical trial. I was introduced to my coordinator who, in a very short time, became a close friend. Between my doctor and his team, I felt very comfortable entering the program. It was an easy decision for my husband and me. The benefits outweighed the risks.

I’d be lying if I said I didn’t have any fears and we asked a lot of questions. What if I get the placebo? What if I have a reaction to the drug or an unknown side effect? What if the drug doesn’t work? What if I get sicker? With each question, there was an educated answer. They took the time to go through all the risks. My coordinator read through the entire consent form with us, line by line, and in the end, I signed the consent and we were off to the races!

Did I get a placebo? Yes! Was it the end of the world? No! Did I have any reactions or any side effects? No! Did I respond well to the trial med once I was on the open label? Yes. However, in August 2018, I found out it was only working on the symptoms but not my inflammation, so I discontinued the study and started a drug that was released while I was participating in the trial. The best news was that during my year on the trial, I felt better, and I learned a ton, and I am getting healthier by the day!

Would I participate in a clinical trial again? Absolutely! And I would encourage any patient to consider a trial program. Do the research and ask questions. Be comfortable with your medical team. Communicate often and above all, understand that your decision to participate in a clinical trial will not only help you learn more about your disease, but it will also help thousands of others in the world.

Hometown: Grosse Pointe Woods, Michigan