Fingolimod and Avonex clinical trials results

readers-writeFrom the moment I heard, “You have MS”, I knew I wanted to participate in a clinical trial. When my diagnosis was confirmed in early 2005, I started asking the doctor what my options were for participating in some sort of MS clinical drug trial. He was hesitant to send me down that road, I was never sure why, but I was persistent. I called the hospital at least once a week for MONTHS, asking when they were enrolling in the upcoming trials. They would always say “soon”, but I really wanted to do something as soon as possible. Finally, after 9 months, I got a call to come in and look at what they had as options. I did my research upfront, looking on their website to see what trials they were offering. I chose one that looked at both Avonex and Copaxone together. I was going to get one or the other (and a placebo) or both drugs in combination. I did not know what I was getting and neither did the doctor. For three years, I stuck it out (literally!) taking a daily injection and a weekly intermuscular injection. It was not without side effects, some of which were more than just a little bothersome, but I completed the study totally compliant. When asked to continue into an extention, I declined as I could not take the flu like symptoms every time I took the IM injection any longer. I chose quality of life over slowing disease progression. That seemed like a good choice for me at the time. Until I relapsed. It was only 5 months later when I had a relapse that scared me very badly.

I went back to my hospital and neurologist and asked about another clinical trial. This one was for an oral drug (sounded good to me!) that was known at the time as Fingolimod. I entered into that trial in early 2009 and am currently enrolled in a long term extension trial for the same, FDA approved drug now known as Gilenya. Having no side effects and no relapses so far, I am happy to say that for me, this was a good choice.

What I like most about clinical trials is the amount of care/support I have received participating in both trials. Seeing my nurse and/or neurologist at least four times a year is a great way to stay in touch with my MS. I feel the level of care is an extra bonus to the more deeply felt reason I chose to participate in clinical trials. That reason is very simple. I want to help others with MS. Period. If I can do anything that might make someone else’s disease course easier, I want to do it. If any information researchers can gleen from my MS might help lead to a cure, why would I not help provide it? Of course, I realize that clinical trials are not for everyone. I have a family, a husband, and children. Trials are not without risks and I weighed those risks with my family. I listened to their concerns and in the end, would not have participated without their full support. Right now, this moment…I am happy to be part of a clinical trial.

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BMC Medical Research Methodology at the 35th Annual Conference of the ..  — BMC Pediatrics
The conference will focus on issues such as design and analysis of clinical trials, methods in biostatistics and development of clinical prediction models.

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