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Gilenya (fingolimod) the First Oral Pill to Treat MS - My Personal Experience (Part 1)

Updated on February 19, 2012

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 my desire to chart my progress or declines associated with my treatment choice so that others in similar circumstances can further their knowledge and come to a sound decision as to whether Gilenya is the treatment of choice. As for the specifics of Fingolimod please feel free to read what I wrote about Gilenya when it was first approved.

Needless to say, this new drug is not the drug of choice for me. It is easy to be hesitant to try a drug that demands so much in the way of screenings and examinations. Only time will tell me if this will be worth it. Of course I have found many reasons to feel optimistic based on the good reports I have been reading about other people with MS who are currently taking Gilenya.


Beginning the Process

Part one will recap the steps and procedures necessary leading up to the first official dosage. 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. This was not a tough decision in my case because I had stopped giving myself the Copaxone injections once the site reactions started to become a nuisance. My neurologist preferred I stick with Copaxone but since I did not want to tolerate the injection site reactions (not to mention the injection itself) he told me the only other choice was Tysabri or Gilenya. We decided on Gilenya and he got the ball rolling by contacting the company while I was still in his office.

Immediately I had to read and sign and date what appeared to be a mini-medical release. Of course the company needs the insurance information and I expected to be given prescription information, however 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 prescriptions 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. So be prepared to see 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 optomologist to screen for macular degeneration; and last but not lease a representative of Novartis who will draw some blood and give you an ECG. Upon signing the necessary paperwork I was told to expect a call from Gilenya as my next step

The Gilenya support program uses a pier level approach. The company itself calls you and your nurse introduces herself over the phone. She sets up the initial appointment for your initial assessment with the medical staff at the Concentra Center closest to your 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. It has been roughly a month since I began the screening exams and my neurologist still has not given the okay for me to begin taking the medication.

His nurse informed me that it takes quite some time for the doctor to give his consent and she was not able to give me any kind of timeline. So I am presently on hold waiting for the paperwork to be completed.

It turns out getting in to see all the specialist was the smoothest part of the process so far. All the necessary tests were completed in one month. I am wondering how long it will take my neurologist to complete his portion and clear me to begin taking my one pill per day.

Back to the Screening Process

A brief review of what the screening process is about would no doubt be helpful information for anyone considering Gilenya.

Concentra performed my first assessment. A very friendly 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 has 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 consists of a DVD player, a reclining chair, a mini-refrigerator, and a snack container.

The initial dose is taken under the supervision of a Concentra physician and I will be observed for six hours. I will be asked to stand up frequently and if my heartbeat slows down special care will be given to keep me moving so that it stabilizes. Just knowing this process is in place is enough reason to feel intimidated, but the majority of folks who have experienced it state that it ends up being more scary in the head than it is in reality.

Every Concentra Center is not the same, some have televisions, some are not WIFI compatible, and some may offer more amenities. Suggestions are made to pass the time without boredom setting in and I expect to be loaded up with plenty to do when I am finally assigned my first observation date.

Long List of Side Effects Discussed

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, our medical insurance covers the drug. Still from what I understand so far, our deductible may be at least $125.00. Gilenya promises to reimburse up to $800.00 a month or $10,400 per year. Since I haven't moved along far enough to give exact numbers in my individual case; I can only relate the price information provided by Novartis.

Initial Symptoms to Watch for

I am prone to break out in rashes when I am allergic to a medication. I am not sure if it is the medication itself or the additives included with the medicine. Newer antibiotics make me break out as has one or two of the MS medications. Apparently a few have had to discontinue Gilenya because of rashes. I hope I am not going to end up being allergic to anything in the pill.

So concludes Part 1 of my Gilenya experience. As I experience more new and exciting things, I will be sure to provide updated information.


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    • Jen's Solitude profile image

      Jen's Solitude 5 years ago from Delaware

      Prasetico30 and Rastermermaid, thank you both for your comments.

    • Rastamermaid profile image

      Rastamermaid 5 years ago from Universe

      Good Luck!

    • prasetio30 profile image

      prasetio30 5 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 image

      Jen's Solitude 5 years ago from Delaware

      Thanks Paradise, I will keep you posted. ;)

    • Paradise7 profile image

      Paradise7 5 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 image

      Jen's Solitude 5 years ago from Delaware

      I hope you are right, Patricia TL. ;)

    • PatriciaTL profile image

      PatriciaTL 5 years ago from Lehigh Valley

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

    • Jen's Solitude profile image

      Jen's Solitude 5 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 5 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

      rontlog 5 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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