Meet the GILENYA Guides

Chris S.

Trade analyst by day
In his spare time, he can be found swimming and engaging in other water activities

Where did you turn for support when you were first diagnosed? Where do you turn now?

I didn't really. I'm pretty independent. I did have great friends who would do my injections because I hated doing it so much. Now if I need support, I have my GILENYA family. We call ourselves the 'Uber Awesome Fingolimoids' (inside joke) and I love them.

  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.It's not the end. If there was any time to have MS, it's right now. Medicine has come so far.
  • Q. What was your reaction when learning about the baseline assessment tests and what the first-dose observation (FDO) would be like?
  • A.No hesitation.
  • Q. What was your first day on GILENYA like? What did you do to pass the time (during the 6-hour monitoring of the FDO)?
  • A.Uneventful. Heart rate went down for a little while, but came right back up. Everything went smoothly. I got to know my nurse pretty well, and I brought my iPad, so I was plenty entertained.
  • Q. Was there a difference between what you anticipated for the first day on GILENYA and what actually took place?
  • A.Nope, everything went smoothly.
  • Q. What does being a GILENYA Guide mean to you?
  • A.I get to hear people's stories, and put them at ease about the unknown and unfamiliar. People might think that I'm helping them out, but I feel like I'm the one benefitting.
  • Q. What would you tell someone doing their own research that may be confused between what's fact and fiction?
  • A.There is no cure for this yet. Medications have risks and possible side effects. In my experience, I have had zero complications or side effects while on GILENYA.
  • Q. How many relapses were you experiencing before you started GILENYA?
  • A.At least 1 or 2 a year if not more.
  • Q. How many relapses have you had since you started taking GILENYA?
  • A.Zero. At least, nothing noticeable. I still know I have relapsing MS, but no defined event and no further physical decline for me." Everyone's experiences are different.
  • Q. In what ways, if any, has your journey with relapsing MS had a positive impact on your life?
  • A.I've been able to meet a lot of amazing people, and I've been able to see what's really important. Life is about who you share it with.
  • Q. Did you join any online or local support groups when you were first diagnosed? If not, when did you decide to find a community to support you through this journey?
  • A.I wasn't involved at all until GILENYA. Being a GILENYA Guide has given me a voice and a fantastic circle of friends.

*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.

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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

  • Avoid mention of side effects from GILENYA. We take drug product safety seriously. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call
    1-800-FDA-1088

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

 
 

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