Meet the GILENYA Guides

Colleen E.

Full-time marketing professional
Completed her MBA, has a first-degree black belt in tae kwon do and is a yoga instructor in training

How did you find out you have relapsing multiple sclerosis (MS)?

I was at the gym one morning and I noticed some numbness and tingling in my index and pinky fingers. Over the course of a few weeks, the numbness intensified. It spread from my entire hand, to my arm, and down the front side of my body. I had several doctors' appointments and various tests to confirm my relapsing MS diagnosis.

  • Q. How did you react to your relapsing MS diagnosis?
  • A.I was shaken to my core. It was scary not knowing what I did to get this condition, or what I could do to stop it. I did not know what my future would look like. But I also felt a sense of relief. I finally understood what had been going on with my body.
  • Q. How has your attitude toward relapsing MS changed?
  • A.I am not afraid of relapsing MS any longer. And I think my fear has reduced for a few reasons. First and foremost, the treatment that I am on is working for me. Next, with time comes acceptance. It has been 8 years since the onset of my first symptoms. I now understand that there are ups and downs. I am able to fight through the lows and enjoy the highs.
  • Q. Where did you turn for support when you were first diagnosed? Where do you turn now?
  • A.When I was first diagnosed, my primary support was the family and friends around me. Now, I turn to the 9 GILENYA Guides that I met during a GILENYA event in LA for support. They are my MS family, and my primary support for anything related to relapsing MS.
  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.I would say that selecting the right medication is critical. You need to understand that options are available. Work with your doctors to find the right treatment plan for you. It is about management versus control. The highs and lows are going to come. But, how you manage them is going to be critical to how you manage this condition overall. It's a marathon, not a sprint.
  • Q. What ran through your mind as your doctor discussed the risks/side effects of taking GILENYA?
  • A.When my doctor reviewed the risks and side effects of taking GILENYA, it was a lot to process, but there is always a lot to consider when it comes to managing my MS. I was very thoughtful in my decision to switch medications, and I did my research, so after careful consideration, my doctor and I decided GILENYA was right for me.
  • Q. What was your reaction when learning about the baseline assessment tests and what the first-dose observation (FDO) would be like?
  • A.I did my research and I understood the reason for the testing. I was a little anxious, but also hopeful. The possibility of not having to deal with the injections was greater than any anxiety that I felt about switching medications.
  • Q. What was your first day on GILENYA like? What did you do to pass the time (during the 6-hour monitoring of the first-dose observation, or FDO)?
  • A.During my first dose, I read a book, responded to e-mails, and I actually worked a little bit. My advice would be to bring your tablet and fire up Netflix. Watch some videos, listen to some music, or read to pass the time.
  • Q. Was there a difference between what you anticipated for the first day on GILENYA and what actually took place?
  • A.It was easier than what I anticipated. It was a very uneventful day for me.
  • Q. What does being a GILENYA Guide mean to you?
  • A.Going through the Guide training was one of the most empowering moments of my entire life. I went in not really knowing what to expect. And when I came out, I was able to talk about my condition in a way that I have never talked about it before. I can share my perspective on life, my relapsing MS, and how I deal with it in ways I never thought. It's so empowering to be part of the GILENYA Guide community!
  • Q. How many relapses were you experiencing before you started GILENYA?
  • A.1 to 2 relapses a year.
  • Q. How many relapses have you had since you started taking GILENYA?
  • A.Since starting GILENYA, I've had one relapse.
  • Q. What would you tell someone thinking about taking GILENYA?
  • A.Not every medication is right for every person. You have to weigh the risks and benefits and have a discussion with your doctor. I would encourage other relapsing MS patients to see if GILENYA would be a good option for them to try.
  • Q. How do you tell your relapsing MS, "HEY MS, Take This!"
  • A.I tell my relapsing MS, 'Hey MS, Take This!' every morning. I wake up at 6:00 AM for yoga 5 days a week. Some days, I wake up tired or fighting it, but I know that I can power through. My condition is not stopping me. MS may tell you that you can't do something—but I am using it as a way to say, 'I can!'
  • Q. In what ways, if any, has your journey with MS had a positive impact on your life?
  • A.My relapsing MS journey has been surprisingly positive. I was diagnosed with a chronic illness. But through the course of being diagnosed, accepting, and figuring out how to manage it, I realized that I am stronger than I ever imagined. Meeting other relapsing MS patients and other GILENYA Guides has been very empowering and reassuring. I want to dedicate more of my time to turning what could been seen as a negative into a positive.

*GILENYA can result in a slow heart rate when first taken. You will be observed by a health care professional for at least 6 hours after you take your first dose. You may need to repeat this monitoring if you miss a dose or are a child who is moving to 0.5 mg from the 0.25 mg dose.


Are you ready for one pill, once a day*? Get tips for talking to your doctor about GILENYA.



What sets GILENYA apart? It's all in the details: see GILENYA in action.



GILENYA is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS), to include clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, in adults and children 10 years of age and older.


You should not take GILENYA if in the last 6 months you experienced heart attack, unstable angina, stroke or mini-stroke (transient ischemic attack or TIA), or certain types of heart failure. Do not take GILENYA if you have an irregular or abnormal heartbeat (arrhythmia), including a heart finding called prolonged QT as seen on an ECG, or if you take medicines that change your heart rhythm. Do not take GILENYA if you are allergic to fingolimod or any of the other ingredients.

GILENYA may cause serious side effects such as:

  • Slow heart rate, especially after first dose. Adults and children will be monitored by a health care professional for at least 6 hours after the first dose or after a child takes the first dose of 0.5mg of GILENYA when switching from 0.25mg daily dose. Your pulse and blood pressure will be checked hourly. You'll get an ECG before and 6 hours after your first dose. If any heart problems arise or your heart rate is still low, you'll continue to be monitored. If you have any serious side effects, especially those that require treatment with other medicines, or if you have certain types of heart problems, or if you're taking medicines that can affect your heart, you'll be watched overnight. If you experience slow heart rate, it will usually return to normal within 1 month. Call your doctor, or seek immediate medical attention if you have any symptoms of slow heart rate, such as dizziness, tiredness, feeling like your heart is beating slowly or skipping beats, or chest pain. Symptoms can happen up to 24 hours after the first dose. Call your doctor if you miss 1 or more doses of GILENYA—you may need to repeat the 6-hour monitoring.
  • Increased risk of serious infections, some of which could be life threatening and cause death. You should not receive live vaccines during treatment with GILENYA and for 2 months after you stop taking GILENYA. Vaccines may not work as well when given during treatment with GILENYA. GILENYA lowers the number of white blood cells (lymphocytes) in your blood. This will usually go back to normal within 2 months of stopping GILENYA. Your doctor may do a blood test to check your white blood cells before you start GILENYA. Call your doctor right away if, while taking GILENYA or for 2 months after your last dose, you have fever, tiredness, body aches, chills, nausea, vomiting, or headache accompanied by fever, neck stiffness, sensitivity to light, nausea, and/or confusion. These may be symptoms of meningitis.
  • Progressive multifocal leukoencephalopathy (PML). PML is a rare brain infection that usually leads to death or severe disability. If PML happens, it usually happens in people with weakened immune systems but has happened in people who do not have weakened immune systems. Call your doctor right away if you have any new or worsening symptoms of PML that have lasted several days, including changes in your thinking or memory, changes in your vision, decreased strength, problems with balance, weakness on 1 side of your body, loss of coordination in your arms and legs, confusion, or changes in your personality.
  • Macular edema, a vision problem that can cause some of the same vision symptoms as an MS attack (optic neuritis), or no symptoms. If it happens, macular edema usually starts in the first 3 to 4 months after starting GILENYA. Your doctor should test your vision before you start GILENYA, 3 to 4 months after you start GILENYA, and any time you notice vision changes. Vision problems may continue after macular edema has gone away. Your risk of macular edema is higher if you have diabetes or have had an inflammation of your eye (uveitis). Call your doctor right away if you have blurriness, shadows, or a blind spot in the center of your vision; sensitivity to light; or unusually colored vision.
  • Swelling and narrowing of the blood vessels in your brain. A condition called PRES (posterior reversible encephalopathy syndrome) has happened rarely in adults taking GILENYA. Symptoms of PRES usually get better when you stop taking GILENYA. However, if left untreated, it may lead to a stroke. Call your doctor right away if you experience any symptoms, such as sudden severe headache, sudden confusion, seizures, or sudden loss of vision.
  • Liver damage. Your doctor should do blood tests to check your liver before you start GILENYA and periodically during treatment. Call your doctor right away if you have nausea, vomiting, stomach pain, tiredness, loss of appetite, dark urine, or if your skin or the whites of your eyes turn yellow.
  • Breathing problems. Some patients have shortness of breath. Call your doctor right away if you have trouble breathing.
  • Severe worsening of MS after stopping GILENYA. Many people who have worsening of MS symptoms after stopping GILENYA do not return to the level of function that they had before or during treatment with GILENYA. This can also occur in women stopping due to pregnancy or planning a pregnancy. This worsening happens most often within 12 weeks after stopping GILENYA, but can happen later. Do not stop taking GILENYA without talking with your doctor. Tell your doctor if you have worsening symptoms of MS after stopping GILENYA.
  • Increases in blood pressure (BP). BP should be monitored during treatment.
  • Cancers including basal and Merkel cell carcinoma and melanoma. Tell your doctor if you have any changes in the appearance of your skin, including changes in a mole, new darkened area in your skin, a sore that does not heal, or growths on your skin such as a bump that may be shiny, pearly white, skin colored, or pink. While taking GILENYA, limit the amount of time you spend in sunlight and ultraviolet (UV) light as well as use sunscreen with a high sun protection factor and wear protective clothing. Lymphoma has also occurred in patients receiving GILENYA.

GILENYA may harm your unborn baby. Talk to your doctor if you are pregnant or planning to become pregnant. Women who can become pregnant should use effective birth control while on GILENYA, and for at least 2 months after stopping. If you become pregnant while taking GILENYA, or within 2 months after stopping, tell your doctor right away. It is not known if GILENYA passes into breast milk. Talk to your doctor about the best way to feed your baby if you take GILENYA. A pregnancy registry is available for women who become pregnant during GILENYA treatment. For more information, contact the GILENYA Pregnancy Registry by calling Quintiles at 1-877-598-7237, by e-mailing, or by going to

Tell your doctor about all your medical conditions, including if you had or now have an irregular or abnormal heartbeat; stroke or mini-stroke; heart problems; a history of repeated fainting; a fever or infection, or if you are unable to fight infections due to a disease or are taking medicines that lower your immune system, including corticosteroids, or have taken them in the past; eye problems; diabetes; breathing or liver problems; or uncontrolled high blood pressure. Also tell your doctor if you have had chicken pox or have received the chicken pox vaccine. Your doctor may test for the chicken pox virus, and you may need to get the full course of the chicken pox vaccine and wait 1 month before starting GILENYA. Children 10 years and older should complete their vaccination schedule before starting GILENYA.

If you take too much GILENYA, call your doctor or go to the nearest hospital emergency room right away.

Tell your doctor about all the medicines you take or have recently taken, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

The most common side effects with GILENYA were headache, abnormal liver tests, diarrhea, cough, flu, sinusitis, back pain, abdominal pain, and pain in arms or legs.

In the pediatric study:

  • The safety in children 10 years and older receiving GILENYA was similar to that seen in adults.
  • The rate of seizures was higher in GILENYA-treated patients compared to that of a leading injectable.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call 1-800-FDA-1088.


Speak up and share your message. Tell multiple sclerosis (MS) how you really feel by posting your message on our "HEY MS" message board.

Make sure your voice is heard. We love that you want to say "Take This!" to relapsing MS, but there are still some words even we can't use—words that might not be appropriate. They're defined in the Community Guidelines below. But have no fear; we'll give you a heads up if you use any problematic words by highlighting them after you hit submit. So, go for it, and tell relapsing MS how you really feel!

  • Do not include medical advice or any non-approved use of GILENYA

  • No profane, indecent, or inappropriate language in your message or image, please (a no-no)

  • Avoid using your full name and/or e-mail address in your message, so this personal information remains private and protected

  • Do not include spam, such as links to or URLs for other websites or social networks in your message

  • Refrain from sharing any treatment and/or dosage information, as well as names of specific medicines (brand name or generic) and product manufacturers

  • We take drug product safety seriously. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call

Please note that in order to comply with our Community Guidelines as well as the FDA's Prescription Drug Advertising Guidelines, your statement may be subject to modification, while maintaining the spirit of your message. Your photo and statement may be used in other GILENYA marketing materials



Discover why GILENYA may be right for you and find out how to get started. GILENYA delivers the info straight to you.