There is no known cause of lupus, few medicines, and no cure. But in recent years, more and more pharmaceutical and biotech companies have developed lupus treatments and are conducting clinical trials to meet FDA approval.
There are 11 lupus trials now recruiting in the Los Angeles area.
Here, Stacey, who is 48 and from Los Angeles, weights the pros and cons of the process, and shares why she volunteered for a clinical trial.
“My doctor approached me about getting involved in a clinical trial. He knew I was struggling with the illness, and financially.
It may seem strange but I didn’t really have any major concerns—just questions about the logistics and the process. I take so much medication for lupus and fibromyalgia that receiving “test” infusions just seemed like the next logical step…and having more access to my doctor was a huge incentive.
Since enrolling in the trial I not only get more “face” time with my doctor, but it’s also opened me up to being a better “patient”—if there is such a thing. Because I go to the study office frequently, I don’t have a tremendously long list of items to go over. And I’ve found that I’m calmer about what I’m enduring.
The trial technician, Inga, is extremely helpful when I’m experiencing new symptoms. For example I’ve had some fainting episodes lately and she took time to go over the issue. I’ve already mentioned to her that I would love to do another trial after this one.
Participating in a clinical trial affords me the gift of feeling more in control over the illness with every visit I make. If I’m helping someone else in the process, it’s the icing on the cake!”
Visit LupusTrials.org to get the facts on clinical trials, read more volunteer stories, and learn how you can get involved.