Considering Gilenya

[nevins]

Any under 30's taking Gilenya? Considering this or Copaxone.
Hate needles but MRI showed 15+ small (<6mm) periventricular lesions. Slight tingling in face otherwise no symptoms. Wondering how others decided on course of treatment with similar presentations. Thanks in advance for comments!

[Bob698]

First off, have you been diagnosed?

Next, forget the "window shopping". Go with what works, whichever med it is. At some point you'll have to trust your doctor, try to pin them down in terms of which med they would want.

[Myoak]

Sorry my response is not to your exact question but I add this in case you may want to expand your options. A test for JC virus antibody is available for those who consider Tysabri. For patients who are JCV antibody negative, many neurologists are now considering Tysabri a first line treatment, as indicated in the link below.

Quote pulled from Aug. 14, 2012 press release sourced in the link below, “58 percent of neurologists perceiving Tysabri's benefit outweighs its risks in seronegative patients compared to 13 percent of neurologists for seropositive patients” End Quote.

I would have to believe anyone considering Gilenya would take a careful look at a more effective med, Tysabri, which has a very good safety profile (superior to Gilenya in my opinion, please understand you must study and form your own opinion) for those who are JCV antibody negative.

http://www.marketwatch.com/story/us-...ort-2012-08-14

[nevins]

Thanks. Yes I have been diagnosed by the neuro. They offered up copaxone or gilenya as treatment options. Trying to research each option and pick one to start. Or if B-12 is right around the corner, would waiting a short while for that to be approved be prudent?

[Myoak]

Nevins,

Comparing the effectiveness and safety profiles of copaxone, gilenya, and BG-12 and concluding it would be prudent to wait a short time for BG-12 is absolutely spot on, in my opinion. BG-12 is more effective than copaxone and has a better safety profile than gilenya, IMO. Ask your neuro for his thoughts.

[nevins]

Thanks I will.

Considering Gilenya, but what's BG-12?

I have been on Copaxone for the past three years and found it worked well...until this past year.

My neuro suggested Gilenya as an option, but I'm afraid of how much more expensive it is; worried my ins. company won't approve it. Thought about asking about Novatrone (sp?). Never heard of BG-12. Can you tell me what it is?? Is it still in a testing phase??

[manderson]

Yes, BG-12 is still in the final testing phases. It's an oral med that is promising and has fewer side effects than G.

Thanks, Manderson. I actually found another thread on here that answered my question about that. Felt sorta embarrassed. Wondering about playing the "waiting game" on that one. I guess I could call my neuro about it, but then I also wonder about what the cost may be, if insurance will cover it, etc. Hate having to make this kind of decision; was so easy when Copaxone was the preferred choice and the only others were the interferons and Tysabri (which "scares" my neuro.).

Now...I just don't know. Don't like looking at all of the side effects of so many newer ones and my neuro didn't even think the "older" ones would help; told me they may lead to depression. I really do have a love/hate relationship with meds, these days.

[gighbrgal]

No Gilenya for me

Have been on Copaxone for 11 years without an exacerbation. I have run out of injection sites & am tired of shots, so Neuro decided to start me on Gilenya. After I'd had my MRI & blood work done she changed her mind. Said she had some concerns about putting me on Gilenya. Currently I am waiting w/o medication for what is the newest oral medication. (Am assuming it is BG-12). A little concerned to be off disease modifying medication, so far doing OK on just Ampyra & an antidepressant.

[MellyNJ]

I am in the same boat

Any under 30's taking Gilenya? Considering this or Copaxone.
Hate needles but MRI showed 15+ small (<6mm) periventricular lesions. Slight tingling in face otherwise no symptoms. Wondering how others decided on course of treatment with similar presentations. Thanks in advance for comments!

I am 31 and am currently on REBIF but my neuro wants to put me on stronger meds after my last MRI showed many new lesions. I am currently looking into either Gilenya or Tecfidera (BG-12) and am stuck as to what to do.

Although there are far more safety issues and more monitoring that comes with Gilenya, it HAS been around much longer and has proven itself effective outside of studies. Whereas BG-12 is reeeeally new and it hasn't really proven itself yet.

I'm torn!! I would say, do your homework and talk to your neuro. And go with your gut!