Letter to a Scared Young Woman

Dear Lauren Parrott,

I know you’re scared. The fears that you shared in your video blog ring true to any of us who have faced the unknowns of a new multiple sclerosis medicine.

https://www.youtube.com/watch?v=eS9-nSfvgSI

I’ve been there.

I’ve gone through three major multiple sclerosis drugs over the 35+ years that I’ve been fighting MS. I was a subject in the clinical trial of Avonex — in other words, a guinea pig for a brand-new drug.  Was I nervous? You bet! But my neurologist, who sounds like your Dr. Rossman, was someone whom I trusted. So, I went on that drug for several years and it helped.  My reward was worth my risk.

Then I moved to Tysabri and finally to Aubagio.  As you know, Tysabri is a drug with a very serious potential side effect — the sometimes fatal brain disease called progressive multifocal leukoencephalopathy or PML. But both drugs have helped slow the progression of my MS. Again, the reward was worth the risk.

In December I’m going to switch drugs again. I’ll be starting Lemtrada. I don’t think that I’ve ever been “scared” about any of my drug therapies, but for some reason I am a little nervous about this one. Maybe it’s because some people using Lemtrada have reported some very uncomfortable side effects — I’m a wimp when I don’t feel well. But I’m determined not to let my nerves prevent me from taking advantage of this drug. The potential reward of having some of my MS symptoms reversed seems far greater than the risk involved.

My neurologist told me “the buzz is good” about your new drug, ocrelizumab.  A story on the investing website Motley Fool headlines it as “The Revolutionary Multiple Sclerosis Drug You’ve Never Heard Of.”  Ocrelizumab, which Genentech hopes to market under the name Ocrevus, is special because it’s designed to treat primary-progressive as well as relapsing-remitting MS.

I’m sure that Dr. Rossman wouldn’t have recommended ocrelizumab to you if he didn’t think that the drug was right for you. Even though he’s no longer able to be at your side through this trip, please know you can count on other MS patients, like me, to walk down that road with you.  We’ll try our best to help you through those scary risks so that you can give yourself a chance to reap those rewards.

[More of my columns can be seen on my personal website: www.themswire.com]

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