Hi, I’ve just been diagnosed with MS and been given a choice of available treatments I’m considering Aubagio (teriflunomide) and it looks like this is the best in terms of fewer side effects. Can I ask if anyone else is on this and has it worked for them? I’m worried about the hair loss/thinning risk. Also would anyone suggest the best time of the day to take the tablet as I’m aware some should be taken with care to reduce the effects on my everyday life. I’m only a 25 year old female, recently moved away alone from my friends and family for a new job and a little concerned/scared I’m not going to be able to cope getting through this by myself. I know everyone’s MS is different but I’m hoping it should be many years from now before it starts truly effecting me at the moment I’ve only had recurrent episodes of optic neuritis and I get pains in my legs. Any advice would be much appreciated
I saw your post without a reply so here’s mine. I was diagnosed with RRMS in December 2016 and was given a choice of DMDs (Aubagio and Tecfidera) after my relapse in February this year. I chose Tecfidera as the statistics for prevention of relapses and disability are slightly better than for Aubagio. All drugs have the potential for side effects and I have had several with the Tec, although they are largely settling now. I find that the Tec has helped my recovery and reduced my symptoms. But I suppose it’s up to everyone to make their own choice, good luck on whichever you choose.
Choosing which drug to use is a bit of a minefield - and not something anyone else can give you serious advice on - you have to make the decision yourself. Lowest risk drug that controls the symptoms and stops relapses; that was my criteria. When I was first diagnosed they wanted to put me straight onto Tysabri, but I got scared and bottled out of that one! I eventually chose Rebif, which has a proven safety record - it’s antiquated enough and they’ve got twenty or more years of safety data. I haven’t had anything I’d call a relapse since I started on it in 2014 - a few bad days, but not a relapse as such - and while it’s doing what it should, I’m happy to stay on it.
Thankyou for your reply. I can your reasoning behind the Tecfideria but the more serious potential side effects scared me with that - I know it’s uncommon and clearly you happy on it! But yeah you right I suppose it’s hard to advice on treatments it is more personal thing, but just thought I’d get some thoughts from others so thankyou
Yeah true I know your right really just thought I’d get some thoughts from others to see how other people may have settled on particularly ones or if anyone was actually using the Aubagio to see how they had found it. That Tysabri does sound quite horrific so don’t blame you with that! But great to know you seem ok with the Rebif. I’m not great with needles, do the injections hurt? Probably a very naive question to ask sorry just wondered? Thankyou for your rely
Have you looked at the MS Trust Decision Aid? This contains a lot of info on DMTs and is designed specifically for someone in your situation. There is a lot of info to take in, but it is quite well laid out and many have said they found it useful. I’ve only ever used Rebif so can’t talk about other DMTs from personal experience, but other members of this forum may well be able to share their experiences of Aubagio with you, this is usually a good place for a discussion on DMTs.
With regards to time scale before MS starts making a real impact on your life: I had my first symptoms when I was 20. I had a few tests back then because MS was suspected (including a lumbar puncture) but the best they could say after all the tests was that I might have MS, and then again I might not.
Fast forward to 2016 (36 years later) and after having some more tests it was confirmed that I had MS. My progression so far has thankfully been VERY slow indeed and I hope that continues. I am very much aware of it every day now, but it hasn’t altered my life too much
As for DMD’s - when I was diagnosed I was put on Copaxone - this was fine for a while but then I started to get more and more reactions after the injections - mainly at the injection site. After my appointment with the neurologist this year I was taken off Copaxone and put onto Tecfidera which I started last Thursday. So far all i’ve had is a little bit of flushing - but to be honest I can’t just blame the Tecfidera - it might be my age lol
Don’t fret too much about your choices…if you find that you don’t get along with a DMD it can be changed.
Needles… I’m not so great with them either (read “scared stiff”) which is why I plumped for Rebif. It comes with a nifty little gadget called the RebiSmart
which does most of it for you… you just turn it on, put a fresh needle in it, hold it to the right place and press the button. It hurts a bit for a second or two, but no more than that, and you can numb the spot with icecubes beforehand and you’ll never feel a thing. Good luck!
