Thursday, September 22, 2011

Time to Change My Direction

For years, I have been quite happy with my MS treatment plan. I credit Copaxone with having slowed the progress of the disease with almost no side effects. I have been happy with my neurologist. I have felt that I was doing everything I could do to help myself.

But lately, things have changed. My symptoms have increased, and become much more troublesome. So I've seen a new neurologist, an MS specialist, and decided to reassess my treatment plan. With decreasing functionality and the increasing lesions appearing on my MRI, I agreed that it is time to switch from an immuno- modulating drug to immuno- suppressant drug (DISCLAIMER: I’m not sure if that terminology is accurate).

For those of you who know me, you know that I am conservative when it comes to medications. I never jump on the bandwagon as soon as a new medication or treatment option becomes available, and don’t want a drug that will kill me in the process ("the cure will kill you?"). So it may come as a surprise to you to learn that I am being screened for the new oral medication Gilenya, which was approved by the FDA just last September.

Before I can take Gilenya, I have to have blood drawn, an EKG, and an eye exam because Gilenya has a list of yukky potential side effects, but chances are slim for all of them. If the results of the tests are fine, then I will work with Novartis (drug company) to schedule a first dose observation (FDO) event at a medical facility (heart center). Gilenya can cause a drop in heart rate, so all patients are observed for six hours after swallowing their first pill. Novartis has already assigned a "navigator" to help me verify insurance coverage – more on that later…

I will confess that I am a little anxious about starting a new medication after having been on Copaxone for almost 12 years, especially one that has potentially dangerous side effects. Of course, the odds of having these bad things happen are small, so with trepidation I have decided that the risk is worth it if it will make me feel better down the road, and reduce the scars in my brain.

It will take a few more weeks to get everything checked out before I can begin Gilenya, and I look forward to keeping you informed about my experience.

Next: Long and Winding Road to Gilenya



  1. Hi Joan,
    I have my fingers crossed for you that Gilenya (and the new neuro) will make a huge difference for you. You'll let us know, right?

  2. Yes, Lisa, I plan to share my experiences in hopes of helping others who share my trepidation.

  3. Hi Joanie, I thinking of you & sending healing light & love to you! Blessings...