My Experience with Clinical Trials

I have had psoriasis for over fifty years and psoriatic arthritis for 25 years. I was diagnosed with psoriatic arthritis ten years ago. I have always had psoriasis that has been hard to treat. I was always 75 to 85% covered. My psoriasis never went into remission and the treatments I was on for years never help at all.

I remember one day just waking up sad and depressed. I didn’t want to look like this anymore. I had spent over 40 years of my life getting up every morning putting on creams, lotions, going to lightbox treatments, taking pills and flaking all over the place. My joints hurt and I just was tired.

Enrolling in the trial

I remember seeing an ad years ago for a clinical trial for psoriasis and PsA using a biologic in a magazine. I didn’t know what a clinical trial was and had never heard of a biologic at the time. I called the doctor and made an appointment. It was explained to me that a biologic was a new drug for my psoriasis and PsA that would clear me up. This was a three-month study.

I went to the doctor and had to tell the doctor about any medications I was using for my disease, and medications for phototherapy, or any drugs that could weaken my immune system. They took blood work and did a tuberculosis test.

My only hope when I entered this trial was that I wanted to be clear and pain-free for once in my life. I was just so tired of wearing long sleeve shirts when it was over 100 degrees outside, my joints hurt. I just wanted to be free. I had to go into the doctor’s office twice a week for a shot. When you work you find this challenging to have to leave work for two or three hours a day to go into the doctor’s office. I had to travel thirty minutes each way. I’m glad I had a job that was understanding and I told them it was only for three months.

My trial experience

Within six weeks I was seeing a lot of improvement on my skin and in my joints. At first, I thought I was dreaming. Remember, I have never had clear skin in my life. Within eight weeks I was around 75% clear. I was in Heaven; I brought short sleeve shirts, pantyhose; my first pair of shorts ever. I can’t even explain the joy I was feeling.

At the end of the three month trial, I was around 90% clear and on top of the world. When I took my last shot, I came back to the doctor’s office two weeks later. I was told that was it; basically go home. I was clear, happy and pain-free.

What happens when the trial is over?

Well, lo and behold a few weeks later, my psoriasis came back with a vengeance. I was over 90% covered. I had three different types of psoriasis in two weeks. I went back to the doctor, crying, bleeding and in pain. The dermatologist looked at me and said, “I don’t know what to do for you.” That was a statement that changed my life forever and made me the strongest advocate for psoriasis and psoriatic arthritis that I can be.

I did get better. It took me about six months. I was put on another medication and got approved for another biologic which took months for my insurance company to give the OK on.

My advice

My advice for anyone getting on a study would be to ask questions; lots of questions. I wish I had. What is a biologic and how does it work? What happens after the trial is over? What is the purpose of this trial? It is a pill or a shot? I didn’t know it was a shot until the day I had to get the shot. Does the shot hurt; to me it was very painful? Will you be helping me when this is over? Can I start another treatment right away? Keep a journal about what is going on with your disease to share with your doctor. I was such a mess that I didn’t know if I was coming or going.

I would just like to say, do your homework and work with a doctor that knows the drug, the side effects and not just giving you something because it’s a “study”. I learned the hard way.