The bulk of this blog was written while I was taking monthly trips to the NIH (National Institutes of Health) for an experimental MS (multiple sclerosis) medication, DAC HYP, which was approved in May of 2016 by the FDA to be marketed under the peculiar name of Zinbryta. Before I started taking this drug in 2006, my MS was very aggressive, and resistant to all FDA approved medications then available. Because my disease was too dangerous to not treat, I took a risk on an off-label use of a drug then known as Zenapax, a treatment to keep the immune system from rejecting organ transplants. My other alternative, I kid you not, was bone marrow transplant. In 2010, I learned that all the supplies of Zenapax were being hoarded by the NIH. With further investigation, I learned that the chief investigator of the study was the same neurologist I’d coaxed into prescribing me Zenapax off-label four years previously. Happily, she invited me to visit the NIH (free of charge) to see if I would qualify to participate in the trial. The rest is history. In most of the entries in this blog I refer to the drug as DAC HYP, and sometimes as daclizumab, but it’s the same drug as the Zenapax I used in ’06 and the Zinbryta that will (hopefully) soon be available to all with MS. I’m sorry if all these name changes cause confusion.
In the years since 2006, when I started taking this drug of many names, I’ve had only one MS relapse, and acquired only one additional lesion. Once my MS calmed down, and my trial travel slowed down, I stopped thinking (and writing) about it. I’ve too busy living my life, taking my yoga classes, walking my dogs and teaching my writing workshops. But when I do stop and reflect, I am very grateful for the NIH researchers who took me on, and kept me on for another three years after the official study ended. I became part of the “safety study,” and was flown out to DC every six months.
I am not a doctor. I’m not even a PhD. My experiences as recorded here are merely anecdotal. As I wrote, I strove to be honest and transparent. I did have a brief period in 2011 when I experienced rashes. I swiftly attributed the rashes to the medication. Looking back, I think those rashes might have been due to stage fright. I haven’t been on a stage in years. And lo, I’ve had no further rashes. Other than rash, I’ve experienced no other potential side effects. My liver function has been tested monthly and has continued to function well.t
In the current formulation, the drug is easy to inject; one subcutaneous injection per month through a tiny needle. Back in the early daclizumab days, the drug was administered to me once a month through a 40 minute IV infusion. Without a doubt, the infusion was more effective in combating the disease. I felt fantastic back then: I was able to walk, or swim, for hours at a time. The Zenapax formulation hasn’t given me the same miracle drug results. Which is why I am now looking at new ways to negotiate my disease I joined a clinical trial to study the effects of diet on MS. Somehow, I agreed to hold off on writing about it until the end of my participation….I am very much looking forward to my release date of November 11, 2017, when I get to spill the beans.
My advice to anyone diagnosed with MS, or any other scary sounding disease: don’t give up. Don’t give in to fear. Don’t accept negativity. Keep asking questions. If you don’t like the answers, keep looking for someone smarter to ask. I wish you good health!