To Gilenya or not Gilenya

New members should feel free to introduce themselves here

To Gilenya or not Gilenya

Postby calkeat » Mon Apr 01, 2013 6:22 pm


I was diagnosed with MS 3 months ago after 4 episodes over 8ys, I have been told that it is not known if I have a benign form of MS or not and if or when my MS may progress. It has been suggested to me to start on Gilenya to slow or stop it from progressing any further. I am not sure that I want to do this as the episodes I have had have not left any lasting effect as yet although the last was worse than the others. Also as Gilenya is relatively new no one knows what the long term side effects of this drug could be. Do I start the treatment as a preventative or do I not and wait and see what happens? Obviously if I wait and it does get worse then I will be kicking myself on the other hand I don't really want to be on a drug for the rest of my life that I will never really know what or if it is doing anything!! HELP PLEASE.....
Posts: 2
Joined: Mon Apr 01, 2013 6:09 pm


Re: To Gilenya or not Gilenya

Postby CaliReader » Mon Apr 01, 2013 10:04 pm


No one can really tell you what you should do, but my best guess would be to slow down. I would also get familiar with all of the med choices, from the injections to diet to BG12 to CCSVI to stem cells until you are clear which approach or approaches make sense to you and make you feel somewhat safer living with this disease.

You have many options that are not limited to Gilenya. Your neurologist does not know what treatment will be best for you. You can follow that advice or not.

Best of luck.
Family Elder
Posts: 194
Joined: Fri Nov 02, 2012 4:30 pm

Re: To Gilenya or not Gilenya

Postby want2bike » Wed Apr 03, 2013 7:52 am

This article talks about what some problems you may have with Gilenya. Drug study in England suggest people taking the drugs do worse. ... nking.aspx ... _embedded#!
Family Elder
Posts: 742
Joined: Thu Sep 15, 2011 9:15 am

Re: To Gilenya or not Gilenya

Postby daverestonvirginia » Fri Apr 05, 2013 5:17 am

I agree with the other people who posted, Gilenya does not have to be your only option. I have been doing very well on Copaxone, Vitamin d, and a dairy free diet. But, I would advise you to take steps to alter the course of your MS. I would not wait until it gets worse, assume you have MS and do everything you can while tou still are doing well to stop it.
User avatar
Family Elder
Posts: 196
Joined: Mon Apr 09, 2007 3:00 pm
Location: Reston, Virginia

Return to Introductions


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service