Saturday, October 8, 2011

The Long and Winding Road... to Gilenya

Last month, I decided to change my direction for treating my MS, and chose to start taking Gilenya (the first oral medication FDA approved for the treatment of MS).  It's a pill.  It's just a pill.  But you can't leave the doctor's office with a prescription slip and head to you pharmacy to have it filled.  You must travel the long and winding road...

First, I filled out a Service Request Form while still at the doctor's office that they sent to Novartis to get me registered.

THEN I got blood drawn to check my liver, white blood count, and other mystery things.

THEN I had to get an EKG from my primary care doctor to make sure my heart was okay (Gilenya can cause a drop in heart rate or spike in blood pressure). 

THEN I had to get an eye exam from my opthamologist (Gilenya can cause macular edema, swelling behind the eye that can affect vision). 

THEN I had to wait five days after the eye exam before I could call to get scheduled to take my first pill.  Yes, I had to get scheduled to take the first pill.  The first dose has to be given in a medical facility that will monitor my heart rate for six hours after I swallow the first magic pill. 

AND, then I had to decide WHERE to have my First Dose Observation (FDO).  If I get the FDO at a Concentra medical facility nearby, then I have to pay $500 out of pocket because Medicare does not cover it (I think it's because Novartis contracted with Concentra to help them monitor their own drug). But if I travel over 80 miles south, I can have the FDO for free at a facility south of Baltimore that is not a Concentra site. That's a long drive during heavy rush hour traffic both ways for me (yes, I could get a ride).  I do encourage Novartis to get this resolved.  There have to be more choices.

I am now scheduled for my FDO on 18 Oct.  I just hope Gilenya is worth the journey.

Next:  Another Bump in the Road



  1. That sure is a lot of hoops to jump through to take a pill. I find it frightening. I really hope it works well for you, and you get some perceived benefit from Gilenya. Good Luck!

    My word verif. is rises - could it be a good sign?

  2. Wow! What a PIA!! I hope it helps! Love & Blessings...Susie

  3. Hi Webster, sure hope RISES is a good sign, unless it's an infection rate! LOL!
    Thanks Susie for the good thoughts.

  4. I've been on it for about 3 yrs as part of the guninea pig group. Since the study I was on was "double blinded" (hard to mask that heart rate drop thing), I've only officialy been on the drug since April. I hope it does good things for you. The jury is stull out on whether it's doing any good for me or not - at least it's less painful than the needles.