Meet the GILENYA Guides

SHANNAN B.

A mathematics curriculum specialist for a public school district who loves to travel

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

For weeks I had been ignoring symptoms that I thought were aches and pains from being active. But when the numbness and tingling moved from my leg to my arm, I thought I had a pinched nerve. I have a friend who's a physician assistant and she recommended an MRI and a spinal tap. She didn't tell me until later, but she knew one pinched nerve couldn't explain all my symptoms. When I saw a neurologist, he diagnosed relapsing MS.

  • Q. How did things go after your MS diagnosis?
  • A.My first neurologist looked at my MRI and made some pretty bleak predictions. But telling me I can't do something is a pretty good way to make sure that I will do something. He was pretty inconsiderate in how he spoke to me, but it did get me motivated to find ways to deal with my relapsing MS.
  • Q. How did you go about finding a treatment for your relapsing MS?
  • A.I tried one relapsing MS medication after another, and I put up with them because I wanted to think I was doing the best I could for myself. My doctor knew how I was struggling with the injection medications for a variety of reasons. After discussing with my doctor, together we decided that GILENYA was the right choice for me.
  • Q. What do you tell other people with relapsing MS?
  • A.Life does not end with a relapsing MS diagnosis. It is possible to live an active and fulfilling life. You don't have to prove anything to anyone else. Do what you can and remember it's also OK to slow down when you want to.
  • Q. How is living with relapsing MS different?
  • A.You just have to be a bit more mindful, listen to your body, and take better care of yourself. You may still have relapses along the way—I have. And even still, relapsing MS has made me a more patient person, both with myself and others.
  • Q. Why did you choose GILENYA as a relapsing MS treatment?
  • A.I did not agree with what my first neurologist said, so I drove 80 miles for a second opinion and found someone willing to help me. Together, we found GILENYA.
  • Q. Why are you a GILENYA Guide?
  • A.I want people to know that there will be bumps in the road, but you will have to navigate over them.

*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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