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
Hey lady, I’m a little behind on my reading, but I’m trying to catch up.
RUN FOREST RUN!!!
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.
Bert, I understand that one.
Nicole – is there always the long observation period with Gilenya or is it just for the first time?
Kayla, Just the first time.
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.
eb
You will you all the best Nicole, I really wonder if we can here in Jordan get these pills someday.
Eliza, Thanjs
I wish you all the best but I refuse to take powerful insidious drugs. LDN is as far as I’ll go.
Jon,
I hear those who take LDN really like it.
Thanks for visiting the site.
Nicole
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.
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!
Nicole
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?
Wruttle,I guess I’m just scared.
Nicole
How brave of you to try it and thank you for sharing your experience! Praying it is something that will be of benefit.
🙂
Lisa,
Thanks for reading!
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.
Judy,
Thanks for the idea!
Nicole
I’M GLAD THAT IT WAS NOT BAD!!!!!! JUST STARTED TYSABRI ON FRIDAY. HOPE IT HELPS ME!!!
Cooper,
Good luck to you too!
Nicole
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.
Geof,
I got my fingers crossed!
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 !!
Lisa,
Thanks for your support. What do you do during the day?
Nicole
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)?
Stacey, Doc said I may need something a little stronger than what I was taking.
Nicole
Great info keep doin what you can
Antoinette, I will. Thanks for reading!
Nicole