is anyone tried Aubagio

[candy158]

Hi guys, well my Neuro decided that I should stop Avonex.   She says apparently I am a super candidate for Aubagio....... upon reading up on it on the MS main page it says "NOT good for progressive MS" so, the other alternative is Novantrone / which is like a chemo.  

I don't know what to do now, could someone help me ???

thanks,
Candy

[candy158]

ok guys, how about Gilenya ??  anyone, I remember someone asked about this previously !!!

thxs in advance,
Candy

[candy158]

Heh DV, my neuro has now mentioned Gilenya because my pharmacist gave us the papers , and we were asking him about the Aubagio ..... I'm afraid to lose my hair with it, it seems to be a big possiblity with this drug.  

I am not sure about any of them, they are all scarey, and I'm not sure I want to fight anymore.  I'm getting a bit down, with things, and family issues, and now the Dr's can't even make up their minds about so many things, and apparently they won't consider Tysabri because she ( the neuro) , does not think that I am bad enough yet, and to maybe hold off till I get worse.  

I'm afraid now,  and am quite tearful while I think of this, sorry for this.,

Aubagio is paid for on pharmacare, but the Gilenya isn't , so they have sent off for special dispensation, and see if they will pay for it, so we worry about that too.  So, the Aubagio may HAVE to be the one I go with, and deal with whatever happens.  

Thanks for your posts,
Candy

[candy158]

thank you both for your comments, DV no Gilenya has not been mentioned to me, so far they just have talked Copaxone, Avonex , and the Mitoxantrone ... ( like chemo ) .... I am going to speak with the MS Nurse again on Monday, on the other alternatives that we have talked about.  

So, will let you know what happens,

CHeers,
Candy

[doublevision1]

Candy, I can't remember whether you've explored Gilenya. Also a once daily oral, but with better outcomes in studies than Aubagio re: relapse frequency and progression of disability. I think that potential side effects may be worse though. I am just beginning to explore based on my recent MRI results and symptoms. Spoke to my MS nurse today and she seemed to favour Gilenya over Aubagio (more effective) and Tysabri (potentially less risky). Will be speaking about all the options with neuro, hopefully soon.

So far Gilenya is the only oral covered by the MS Drug Program in Alberta. The others are awaiting approval and expected to go through. For me is not really an issue as my employer group plan covers all the DMDs. I don't know what the situation is in BC regarding coverage under the provincial MS drug program.

[byyygrace]

I have been taking Aubagio for the past 14 months. The first 7  or 8 months I had slight diarrhea and hair thinning. I almost quit because of the hair thinning but my Dr told me that it was temporary. It was, thank goodness!

My hair is normal again and I have no side effects at all at this point. I had no new lesions on my MRI either. I am happy with it.

Good luck with your decision! Maybe check out the MSSA"s report on therapies-there was good info on treatments for progressive MS. The bright side is NO NEEDLES with Aubagio, just 1 pill a day!

Blessings,
Colin