Gilenya: The First Oral Disease-Modifying Therapy

Gilenya (fingolimod) pronounced as “Jil-EN-ee-ah”. Gilenya is the first oral disease-modifying therapy available for the long-term treatment of MS. Gilenya is the first in a new class of immunomodulatory drugs called S1P-receptor modulators. It is similar in structure to a naturally occurring component of cell surface receptors on white blood cells.

Gilenya blocks potentially damaging T-cells from leaving lymph nodes, lowering their number in the blood and tissues. It may also reduce damage to the CNS and enhance the repair of damaged neurons.

Your doctor will probably order some tests before you start Gilenya:

A new or recent blood test to establish lymphocyte (immune cell) count;

An eye (ophthalmologic) evaluation;

A new or recent blood test to evaluate liver enzyme levels;

FA new or recent electrocardiogram in those using heart medications, those who have cardiac risk factors, or those who on examination have slow or irregular heart beat prior to starting Gilenya.

As with all drugs, Gilenya comes with side effects.

Gilenya has an awesome website that discusses the side effects in detail. You can find it here: Gilenya First Dose

Briefly, side effects with Gilenya include:

A reduction in heart rate (dose-related and transient).

Macular edema (a condition that can affect vision, caused by swelling behind the eye); Macular edema can cause some of the same vision symptoms as an MS attack (optic neuritis). You may not notice any symptoms with macular edema. Macular edema usually starts in the first 3 to 4 months after you start taking GILENYA.

Liver problems, reversible elevation of liver enzymes.

Slight increase in lung infections (primarily bronchitis). Infections, including herpes infection, are also of concern.

After completing all the tests and being found a good candidate, I received a call from Gilenya.

After my insurance was approved, I made an appointment for my first dose. April Cunningham at the Gilenya support program talked to me about people without insurance, and the help they may be able to provide.

The first dose will have to be taken at the doctor’s office, it is necessary to stay there for 6 hours to be monitored.

I started taking Gilenya February 16, 2011. I packed a lunch and my laptop and headed off to Dr. Sponsler’s office. He set up a room for me to hang out in for 6 hours.

I didn’t have any negative reactions, so after 6 hours I was good to go. As I left, they set up a follow-up appointment for me to check back.

I am so excited to give Gilenya a try! Have any of you tried Gilenya?

Linda

About our Co-Founder: With a bachelors in Social Work, Linda is 53 years old, happily married with eight children and 17 grandchildren. Diagnosed with MS in 1995 and now having accepted and truly embraced her new reality, Linda has created MSrelief.com. She is dedicated to proving that joy can be chosen while living with Multiple Sclerosis. Linda specializes in helping others, especially those with MS attain the lifestyle, independence and happiness amid living with MS.

9 Comments:

  1. Mark Mcfarland

    First of all thanks for your post.
    I just recently started Gilenya, after having taken Avonex, for two years, then Copaxone for ten years. Needless to say, the pill was a welcomed change. Just wanted to say so far …so good… Just a little numness, a slight head ace, and some fatigue, but no more than before. It’s only been two weeks so we’ll see what happens…Thanks again
    Mark

    • Mark,
      I’m happy you’re feeling success, recognizing that time will tell! Are you walking? Did you get on the pharmaceuticals as soon as you were diagnosed? oh so many questions!
      Linda

  2. Linda,

    I was part of the Phase 3 clinical trial for Gilenya, so I’ve been a “user” for about 2 1/2 years. Did you know two dosages were initially being tested – 1.25mg and 0.5mg? And that since taking 1.25mg out of the trial and only applying for approval of 0.5mg, there have been no reports of macular degeneration?

    I love Gilenya and am a member of their Guide Network, meaning I travel for them and speak to MS patients or caregivers who are wanting to learn about Gilenya from an experienced “user”.

    I wish you the best on ‘G’.
    Anne

  3. Anne,
    Thank you for visiting my blog! I love yours! The funny thing is (maybe ironic is a better word) my middle name is Grace! I’ve always been a klutz, MS has only magnified the situation!
    Linda

  4. I live in the uk and we are all patiently waiting for NICE to make their financial decisions. They’ve only known about it’s prescence for two years, but they’re never in a rush-they don’t have to live with MS! I desperately want to give it a go. I’m needlephobic for a start, and I am still trying my best to hold down a full time job as an art teacher. I’ve had two relapses since January and worked through both-at a cost, long term I know! I’m very good at sticking two fingers up to MS!

    • Goodness~ I’m glad you left a comment on my blog! I live in a bubble so much of the time, worrying about the ‘health care’ issues that are affecting this country, not thinking of what people in other countries are dealing with! I just wish someone would find a cure!
      Linda

  5. I’m glad Gilenya is working for a lot of you. It seems to be a pretty good therapy.

  6. It is good to know that Gilenya is now an FDA approved treatment for oral disease. Although it is an effective medication, it may cause certain side effects so I warn everyone who are planning to use it to be very careful. Use it only as instructed by a health care professional so as to ensure your safety. By the way, I would like to know if it can cause drug interactions?

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