Meet the GILENYA Guides

Ina P.

Wife and mother of four • Knitter and volunteer

  • How did you come to find out you had relapsing multiple sclerosis (MS)?
  • My first MS symptoms occurred around 2000 with tingling and numbness that I thought came from too much exercising. Much later, in 2009, I woke up with a bad headache, and later that morning lost the sight in both eyes. I saw a neurologist and the MRI showed more than 25 lesions. I got some more tests and a second opinion, but the diagnosis was the same—relapsing multiple sclerosis.
  • Q. What ran through your mind when you got your diagnosis?
  • A.I had been able to ignore some of my more mysterious symptoms for quite some time. But losing my sight, even temporarily, was a huge wake-up call. Trust me, that will get your attention. I realized then that the stakes were really high and that making smart decisions was crucial.
  • Q. Do I think of relapsing MS as your adversary?
  • A.Yes, in a way. I'm pretty stubborn. I try to work through my symptoms. If I can, I ignore them. If not, I take a moment and then try again. I'm not laying down and taking this! I have made a lot of changes in the way I treat my body. I used to drive myself on with miles of running and biking. Now, working out is more thoughtful—yoga, Pilates, jogging.
  • Q. What do you share with other people struggling with relapsing MS?
  • A.It was a big shock for me to go from being the strongest, healthiest, fittest person to feeling vulnerable doing even small things. I had to find the right treatment and accept my diagnosis to start to work past that. I tell people they have to keep looking for something that works for them. Maybe that's GILENYA®. But keep looking. You need to give any medication a chance to work, but you have to know when it is time to consider something else.
  • Q. Did relapsing MS change who you are?
  • A.I went through all the stages—denial, anger, grief, you name it. I finally got to acceptance. Still, I've decided the disease doesn't control my life. I control the disease. I'm still me.
  • Q. What brought you to GILENYA?
  • A.I was interested in a medication that was oral, and the prospect of fewer relapses was really compelling."
  • Q. Why do you enjoy being a GILENYA Guide?
  • A.Because I hope my story can help someone else find their own way.

*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.

GILENYA reduced the frequency of relapses by 52% in a 1-year study vs Avonex and by 54% in a 2-year study vs placebo.

  Avonex is a registered trademark of Biogen.

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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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