My Experience

Laurie

Age 48
Natick, MA

Since it’s becoming more evident that people with lupus are at higher risk for cardiovascular disease, I immediately said “yes” when I received a letter inviting me to participate in a study looking at various drugs to prevent and treat this problem.

The researchers made it as easy as possible and were exceptionally kind, thoughtful, and informative. After baseline tests were done (some questionnaires as well as blood tests), I received the pills to take. I did not know which drug I was given—if any, since it could have been a placebo pill. I received a phone call shortly after to check in and to talk about exercise and nutrition.

Unfortunately, after about 2 months I had to discontinue the study. I came down with a symptom which could have been a side effect of one of the drugs, although I didn't know if I was actually taking it. My physician recommended that I contact one of the investigators to discuss it. The lead physician contacted me and recommended that I discontinue the study. I felt bad about ending my involvement.

My mysterious symptom shortly disappeared. Although I had this negative reaction to the medication, participating in the study was a very positive experience. I felt empowered and that I was actively involved in studying ways to improve outcomes for people with lupus.

I’m doing great now—fully controlled on meds.