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Gilenya (Fingolimod) the First Oral Pill to Treat MS - My Experience

Updated on March 17, 2019
Jen's Solitude profile image

I've been living with MS for 25+ years and have tried almost every medication available. I have also been evaluated and tested extensively.


The First Oral Pill Approved by the FDA

I have been waiting for this moment for years-an oral pill to treat MS! Gilenya (Fingolimod) is the first of the oral drugs to receive FDA approval. Unfortunately this oral pill does not come without serious risks. It is easy to be hesitant to try a drug that demands so much in the way of screenings and examinations.

Beginning the Process

Although Gilenya is a pill there are a surprising number of steps that must be followed just to discover if you can give the drug a trial run.

The doctor has to okay the switch. Immediately I had to read, sign, and date what appeared to be a mini-medical release. the wording of the release was the first indication that this was no ordinary pill. The next indication came when I was giving a list of referals for the specialists I needed to see before the drug therapy could begin. These screenings were to clear me for conditions that could be worsened by the drug therapy. A dermatologist for a skin-cancer screening; a pulmonologist for a lung analysis; (This includes a lot of breathing in and out so prepare to get a little dizzy.) an ophthalmologist to screen for macular degeneration; and a representative of Novartis who will draw some blood and gave me an echo cardio gram. Upon signing the necessary paperwork I was told to expect a call from Gilenya as my next step

The Gilenya support program used a pier level approach. The company called and my nurse introduced herself and set up my initial appointment for your initial assessment with the medical staff at the Concentra Center closest to my home.

A Surprising Delay

Gilenya and the nurse advocate moved so swiftly that I was not prepared for the delay that occurs between the time the screenings are preformed and the time it takes my neurologist to clear me for my first dose. Getting in to see all the specialist was the smoothest part of the process. All the necessary tests were completed in one month.

Back to the Screening Process

A nurse drew blood for lab tests including

  1. VZV antibody serology
  2. CBC
  3. Bilirubin
  4. Liver transaminases

An ECG was performed to document my heart's general condition. The results were faxed to the Gilenya Support Program and my nurse navigator, and to my doctor.

The Gilenya Room

Novartis Pharmaceuticals established a center for patients to be observed for the first dose taken. The Concentra centers are an important aspect of the Gilenya Support Program. I was shown what I name the "Gilenya Room". It contained a DVD player, a reclining chair, a mini-refrigerator, and a snack container.

The initial dose was taken under the supervision of a Concentra physician and I was observed for six hours. I was asked to stand up frequently to keep my heart beat from slowing down.

Every Concentra Center is not the same, some have televisions, some are not WIFI compatible, and some may offer more amenities.

Cost of Gilenya

It comes as no surprise that Gilenya (fingolimod) comes with a very expensive price tag. Since the drug has the FDA's approval, your medical insurance may cover the drug but deductibles may vary. On average Gilenya costs a little over $5,300 per month. The dosage: one pill per day.


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    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      9 years ago from Delaware

      Prasetico30 and Rastermermaid, thank you both for your comments.

    • Rastamermaid profile image


      9 years ago from Universe

      Good Luck!

    • prasetio30 profile image


      9 years ago from malang-indonesia

      Nice information. I had never knew about this before. Thanks for share with us. I learn much from you.


    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      9 years ago from Delaware

      Thanks Paradise, I will keep you posted. ;)

    • Paradise7 profile image


      9 years ago from Upstate New York

      Oh my, I do so hope this works well for you, Jen. I believe it will. For some reason, I have a strong feeling this is the right choice for you.

    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      9 years ago from Delaware

      I hope you are right, Patricia TL. ;)

    • PatriciaTL profile image

      Patricia T Lowe 

      9 years ago from Lehigh Valley

      This drug certainly sounds promising. I'll be following your progress reports!

    • Jen's Solitude profile imageAUTHOR

      Jen's Solitude 

      9 years ago from Delaware

      Thank you rontlog. So very sorry to read that your father passed away, losing a parent is terrible. Hopefully the news about Gilenya will be good news for me. I will keep you updated.

      Hey Amy, I was finally able to find a support group for Gilenya users on Facebook. I check in daily and initially was surprised at the number of PWMS who are using the drug as well as the number of people who have been on it since the initial trials began. Now if I can just figure out a way to get my doctors to fax their results to my neuro so that I can began using it too! Great hearing from you, thanks for dropping in.

    • Amy Gurowitz profile image

      Amy Gurowitz 

      9 years ago from Montclair, New Jersey

      Dar, As always, your posts are informative and intriguing. I remember back in '09 I read your "as you live it" series in regards to your post-steroid experience... while I was soaking in it. Now, I find myself wondering why we haven't heard more from people using the first MS drug in pill form. Thanks so much for laying this out for us... I'm looking forward to keeping tabs on this and you!

      All the best to you on this and your other adventures~


    • rontlog profile image


      9 years ago from England

      I wish you well with this new MS drug and will be following your progress.

      You may recall my Dad had MS and I wrote a hub on sources of help in the UK? Sadly he passed away a couple of years ago, but I am still interested to hear about new drugs for MS.


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