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 finally approved by the FDA in May of 2016 as Zinbryta.
On the day I took my last dose of Zinbryta from the NIH study, I enrolled in a study of diet and MS. This new study will take me back to Iowa City, the site of my 1994 diagnosis. At the time of the MS diagnosis, my projections for the future were dire. I had thought there was a pretty strong chance I would be confined to a wheelchair by 2004. I didn’t dare imagine living this long. But somehow, along with my fear of the progression of this disease, I nursed a faith in the progression of science, and in my own progress as a human being. I took up yoga. I tried one drug, which failed me. And a second. And a third. My MS got worse. I kept doing yoga. I kept researching drugs. The one I finally found was not even approved for MS at the time; but its mechanism of action made sense to me. I followed a hunch.
Before I started taking Zinbryta 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 now available others who have had no success with prior MS drugs. 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, even after the official study ended. For three years I was part of the “safety study,” flying out to the NIH only once every six months.
I am not a doctor. I’m not even a PhD. I’m just an MFA. My experiences as recorded here are merely anecdotal. As I wrote, I strove to be honest and transparent about my experiences with Zinbryta. Overall, it’s been transformative. 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 none of the other potential side effects that earned Zinbryta a warning label. My liver function has been tested monthly and has continued to function well.
In the current formulation, the drug is easy to inject; one subcutaneous injection per month through a tiny needle. Back in the early Zenapax days, the drug was administered to me once a month through a 40 minute drip IV. It was worth it then, too.
Zinbryta has been necessary to tame my MS, but I’m not going to claim it is sufficient. My MS doctors see a lot more of this disease than I do, and they all agree that no drug can vanquish a disease alone; their healthiest patients are the ones with the healthiest diets and attitudes. It is my responsibility to actively pursue my health, treating my body and my mind as well as I can. And this is why I am so delighted to participate in this new MS Diet study.
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!