Several years ago after I was diagnosed with sarcoidosis, a systemic inflammatory disorder, I went through different treatments for uveitis, inflammation of the uvea in both of my eyes. Doctors prescribed oral medications and eye drops to try to get the inflammation in my eyes and other organs under control. Although most of these medications were non-steroidal, high doses of prednisone, a corticosteroid, worked the best. Unfortunately, prednisone caused additional damage to my eyes and other parts of my body. Also, attempts to lower the dose of steroids tended to cause more flare-ups.
One of my ophthalmologists, a retina and uveitis specialist, is affiliated with a research clinic in addition to his regular practice. My rheumatologist and he wanted to taper me off prednisone permanently. A couple of years ago, the ophthalmologist told me about a randomized controlled trial designed to investigate a new drug for the treatment of noninfectious uveitis. I met the eligibility requirements for it. So, for six months I went in for testing. I took a pill at the clinic during each visit and took the other pills at home. Although the investigator and I had no way of knowing if I was receiving the medication or a placebo, improvement in the vision in my right eye seemed to indicate that I was one of the subjects getting the medication itself.
If you are thinking about taking part in a clinical trial, here are a few tips:
1. Do not let less than “perfect” health deter you from looking for a clinical trial. Testing for a study begins before enrollment. At the very least, you may undergo a blood test and fill out a questionnaire that covers your personal and family medical history. An acute condition almost kept me out of the uveitis drug study. My doctor was able to get me into the study anyhow after my primary care physician submitted a written statement detailing the cause of the ailment. Depending on the nature of the illness and expected outcome, you might still be able to enroll in an investigative study.
2. Consider the risks and the benefits. Read all paperwork thoroughly. Ask lots of questions, but do your own research as well. Make sure that you are well informed before giving informed consent.
3. You might get a placebo for the entire period. During some clinical trials, if your condition does not improve and you have been taking the placebo, the investigator will be allowed to give you the actual medication. Other studies do not allow a change. Be willing to accept the possibility that you might not derive any health benefit from the study.
In some instances, a clinical trial can be a way to access treatment when FDA approved drugs do not work for you. I went from moderate visual impairment in my right eye to mild vision loss even though the uveitis trial only lasted half a year. For more information about studies, including some that are currently recruiting, visit http://www.clinicaltrials.gov/ for a start. You may find a medical clinical trial in your area.