A Letter to a Scared Young Woman

(This first appeared as my column on www.multiplesclerosisnewstoday.com)

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 MS medicine.

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 who I trusted. So, I went onto 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 the a very serious potential side effect; the sometimes fatal brain disease Progressive Multifocal Leukoencephalopathy, or PML.  But both it and Aubagio 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 that’s because some of the people using Lemtrada have reported some very uncomfortable side effects, and I’m a wimp when I don’t feel well.  But, I’m determined not to allow my nerves to prevent me from taking advantage this drug.  The potential reward, that some of my MS symptoms might be reversed, seems far greater than the risk that’s involved.

My neurologist has told me “the buzz is good” about your new drug, ocrelizumab.  The investing web site Motley Fool calls it “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 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 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 the risks that scare you so that you have a chance to reap the rewards.chronic_illness_bloggers_logo_300x250

 

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One thought on “A Letter to a Scared Young Woman

  1. fgator76

    Lauren, I echo ‘we are in this ride with you and understand what you are going through.’
    Tysabri has been a risk but so far so good. I an still walking and that is really what matters to me. I’ve been on it going on six years. Prior to Tysabri I was on Copaxone for five years and Betaseron the first two yrars.

    I’m looking for either a better drug or Hsct. I will be ready to take the next step.

    Like

    Reply

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