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MS Pill (Part 2)

The presentation below illustrates my experience after my first dose of the MS pill, Gilenya. After a couple of doses, I had to change the time of day I take the pill from morning to night because it makes me extremely tired. As you can imagine this can be fairly problematic if you plan on getting anything done during the day! After reading my gilenya literature, I now know this little pill isn’t going to jump start me walking again. My expectations are more realistic.

I understand that truly as a patient with secondary progressive multiple sclerosis doctors really don’t know what the effects will amount to. I just don’t want to get worse. That’s why I continue to fight. That being said I’m not going to be quick to abandon this pill. Like George Bush, I will stay the course!

I’m not promoting Gilenya. I’m just telling my story.

Multiple Sclerosis (MS) Pill Gilenya-Part 2

29 thoughts on “MS Pill (Part 2)”
  1. Kisha J. 12 January, 2012on2:14 PM Reply

    Hey lady, I’m a little behind on my reading, but I’m trying to catch up.

  2. Bert 9 January, 2012on5:32 PM Reply

    I am leery of the listed side effects, esp. macular edema. My mom had macular degeneration and I don’t want to encourage damage to my eyes.

    Thank you so much for your blog.

  3. Kayla 31 December, 2011on5:56 PM Reply

    Nicole – is there always the long observation period with Gilenya or is it just for the first time?

  4. elaine.baker@me.com 22 December, 2011on1:11 PM Reply

    There IS a walking
    pill called Ampyra. I’m still in a chair (prob cause I started this too late)
    But this definitely helping a my transfers now. Hope to walk again some day, too.

  5. Elza Saleh 19 December, 2011on9:25 AM Reply

    You will you all the best Nicole, I really wonder if we can here in Jordan get these pills someday.

  6. Jon Salisbury 17 December, 2011on2:56 PM Reply

    I wish you all the best but I refuse to take powerful insidious drugs. LDN is as far as I’ll go.

    • Nicole Lemelle 17 December, 2011on5:43 PM Reply

      I hear those who take LDN really like it.
      Thanks for visiting the site.

  7. KIM 15 December, 2011on9:33 AM Reply

    Nicole: I go to my DR tomorrow & he wants me to start Gilenya. I also have SPMS, & have also been on all the same drugs as you with the exception of Batesarone…no relief. Is G going to be any diff for us? I hope so, but I am not expecting a “magic pill”.
    Good luck with this medication.

    • Nicole Lemelle 15 December, 2011on10:08 AM Reply

      Kim, You are right. No one knows what it’s going to do for us! But it’s definitely not gonna be a magic pill!

  8. wruttle 13 December, 2011on10:24 PM Reply

    I’m curious if you have considered veinus angioplasty (liberation procedure) I know it is “controversial” but i’m curious why peoplle are willing to take more dangerous drugs than gett their veins opened?

  9. Lisa 13 December, 2011on7:09 PM Reply

    How brave of you to try it and thank you for sharing your experience! Praying it is something that will be of benefit.


  10. Judy 13 December, 2011on1:11 PM Reply

    Thanks for sharing your story. I hope the drug meets your expectations. It might be interesting at some point for you to share how your perspective as a patient is or is not different than what it might have been when you were a health care professional. That is not a perspective most of us MSers have and might be both interesting and useful to hear. Good luck.

  11. Kshanski Cooper Hilson 13 December, 2011on12:55 PM Reply


  12. Geof 13 December, 2011on12:40 PM Reply

    Sounds like your 3 hour tour took an 8 hour scenic route. That’s a long time to keep you under observation. Will they insist on the long observation as you switch to the later time? As a Tysabri patient, I know all about wasting time whether it’s in the infusion suite or the MRI machine. I’ve actually gotten reasonably good at the look at your watch or a clock, close your eyes and open them as close as possible to the time you set as your goal. I’ve hit the 10 sec mark relatively frequently and the 30 second mark about every 5 or 6 times, but I’ve never gotten closer than 3 seconds off on the minute test. Yes, I have spent way too much time amusing myself in situations where I had to at least appear respectable. Good luck. Hope the time switch works for you.

  13. Lisa Alley 13 December, 2011on12:07 PM Reply

    Nicole, I enjoyed your testimony, I myself have been in a wheelchair, don’t give up Faith, you too may come up stronger than before. My prayers are with you !!

    • Nicole Lemelle 13 December, 2011on8:15 PM Reply

      Thanks for your support. What do you do during the day?

  14. Stacey 13 December, 2011on10:17 AM Reply

    hmmmm…to switch or not to switch. thats my question! in fact, lemme ask u, why did U start it? i know that u’ve run the gamut of therapies, but why now Gilenya (if u don’t mind of course)?

    • Nicole Lemelle 13 December, 2011on11:39 AM Reply

      Stacey, Doc said I may need something a little stronger than what I was taking.

  15. Antoinette 13 December, 2011on9:56 AM Reply

    Great info keep doin what you can

    • Nicole Lemelle 13 December, 2011on11:44 AM Reply

      Antoinette, I will. Thanks for reading!

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