Laurasari, I think pb909 meant a forum here on MSWorld for Aubagio, like there is already for Rebif, Tysabri, etc.
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Aubagio (Teriflunomide) Summary
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getting ready to start aubagio
I just got off the phone with the 1 to 1 nurse with the Aubagio. Well, I'm scared to death now. After hearing the side effects and all. I looked on their website for a forum or local event to hear from other people on it and I too found nothing. I'll let you all know how it goes - if I indeed start it. It's going through my insurance etc. But it sounds like they are going to send it without checking to see if I want to pay the co-payment they come up with. People at Gileyna's events say they got it for free SO I want this for free!
Skipping to Avonex - when I took that for not very long, I lost alot of hair. I don't want that to happen again.
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Am starting Aubagio soon after being on Betaseron 11years
I tried to keep up with the information and clinical trials on teriflunoimide last year, but I was wowed by the relapse/disability numbers of the Lemtrada and wanted to wait until it came out, but after being on the Cladribine trial, it seems I've become more and more disabled, and the more that worsens, the more risk I'm willing to take on these newer drugs.
I'm hoping a "post box" will be designated for this drug on this site soon, so discussions about side effects and results can be bandied about. I will certainly keep this site posted with my personal results. As I told my Dr., I just want to feel better/walk better this year!
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Originally posted by emily06 View PostI just got off the phone with the 1 to 1 nurse with the Aubagio. Well, I'm scared to death now. After hearing the side effects and all. I looked on their website for a forum or local event to hear from other people on it and I too found nothing. I'll let you all know how it goes - if I indeed start it. It's going through my insurance etc. But it sounds like they are going to send it without checking to see if I want to pay the co-payment they come up with. People at Gileyna's events say they got it for free SO I want this for free!
Skipping to Avonex - when I took that for not very long, I lost alot of hair. I don't want that to happen again.
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I heart Aubagio
I have been on Aubagio 14mg since October 21st and it has completely changed my life. I was diagnosed Jan 16th 2012 at the age of 26. I was on Betaseron for 8 months - it was a complete nightmare.. every side effect listed I experienced it. I had elevated liver enzymes, flu like symptoms plus it was an every-other-day injection. Aubagio is a small pill I take in the morning before work and never think about it again. I have not had one single side effect. My liver enzymes are back to normal levels. I haven't experienced any relapses and my normal symptoms are less severe. I feel like a normal person. I guess the biggest question is MRI results but it is too soon for that. So, for now I am enjoying my health and freedom from injections. [/SIZE][/FONT][/FONT]
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Originally posted by Jules59 View PostI'm hoping a "post box" will be designated for this drug on this site soon, so discussions about side effects and results can be bandied about. I will certainly keep this site posted with my personal results. As I told my Dr., I just want to feel better/walk better this year!1st sx '89 Dx '99 w/RRMS - SP since 2010
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My dr has decided he will switch me to aubagio asuming my blood test and ppd are good the blood i had drawn mon and today i had the ppd so thurs i will return to have it read. Then we will move on from there. I am glad i have not read anything bad so please keep us posted how those of you that are on it are doing.
Thanks
laurie
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Hello, my wife has been on Aubagio for the past 19 days and so far doing Great, in fact doing the best she has done in years. She was on Ty for around 3 yrs and was JVC +, finally came off it and went to Gylinia (?) for 2 wks had problems and now on the Aubagio and doing fine.
Between the Ty and Gylinia she got in really bad shape and started having Seizures and was confined to bed most of the time, could hardly walk without help and a walker. Doc gave her 2000mg of Solo Medrol (?) 500 mg at a time, and started the Aubagio and doing really good. I just hope its all from the pills.
She has the crud right now that is going around in this part of the S.E. and feels horrible but is fairly good with the MS. Hope it keeps on working this well
Woody
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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Aubagio "issues".....
Aubagio "issues".....
Glad to hear some of you are responding positively on
Augabio... ...
I gave myself Avonex injections once a week in the thigh
when this MS roller coaster began......and it worked great
for a couple years....
Of course that was just after being correctly
diagnosed and right after completing 6-7 weeks of
Chemotherapy and Solumedrol infusions.
My last Tysabri infusion, # 61, was early December.
Next neuro. appointment was January and that is when my
neurologist informed me about Aubagio.
Since I have active JCV virus.....at this stage I figured
maybe I'm pushing the Tysabri-thing a bit too far.
Being in a "high risk" percentile of Tysabri patients I'm
gonna take his advice and switch......right?.....we'll see....
Everything ready to go and have letters from Medicare
Plus Blue PPO and the specialty pharmacy I was informed I
will use....approving the whole damn thing.....
COPAY ASSISTANCE.....
After being advised my first copay will be $473.51....
Got on the phone & 'net with EVERYBODY in a very
unsuccessful attempt to find a little help with these new
forthcoming bills.....nothing.....nowhere.....nada....nope.
Bite the bullet and call the specialty pharmacy and request
for FIRST shippment.....for $473.51...
...credit card...
...UP FRONT....
...before med goes out...yea!...
WAIT....
Got a call back and the REAL copay will be $722 dollars and change...
...credit card...
...UP FRONT....
...before med goes out...yea!......
I gotta figure a way out of this mess.....this is really getting
to be a real pain ***......
Happy Easter.
-"If you think you can do a thing or think you can't do a thing…you're right."
-Henry Ford
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