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Terrified to start Aubagio!!!

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    Terrified to start Aubagio!!!

    Dx'd in Aug 2004 and started on Rebif immediately. I have never tried anything else. Other than the normal flu like symptoms and site reactions I've had no problems with Rebif. My neuro wants me to try the Aubagio as he says it's time for something new. I am terrified after reading some peoples posts and seeing some of the reactions people are having. Call me vain but I really don't want to start having my hair fall out or not make it to the bathroom in time!! I feel like I shouldn't be complaing and should be excited to be able to stop the injections but I just don't know what to think. Is there anyone here who has a positive outlook on this treatment???

    #2
    Just hi

    I asked pretty much the same thing - looking for positive stories about Aubagio and haven't had any replies either.

    Just wanted to let you know I took my first pill last night and so far so good. I'm HOPING there aren't many threads/posts about Aubagio because most people are doing fine on it. My neuro and the nurse both told me that so I'm going with it!

    Please post if you decide to switch!
    Best of luck!

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      #3
      Rhoda74, I took my 12th dose this morning with no problems or side effects at all. I was terrified of changing from Ty to Aubagio.

      A few of the common side effects for Aubagio were sx's I had recovery from while on Ty, bowel incontinence, also insomnia, both for +10yrs before I started Tysabri. Three months into TY and both sx's resolved, which was life changing for the better, to put it mildly.

      The idea of taking Aubagio with the possibility of GI side effects, and the possibility of losing ground gained while on Ty with insomnia, I just didn't want to lose the recovery I'd achieved while on Ty. But, so far so good.

      I may be experiencing placebo effect, but I actually feel a mild lifting in mood?, that seems to be related to better cognition. That would be mild recovery/some ground gained since starting Aubagio.

      There is a thread about lower dose, 7mg tablets per day. That might be an option if you have any difficulty tolerating the full 14mgs per day.

      Good luck with Aubagio. Keeping my fingers crossed!

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        #4
        Thanks for the replies. After having a long chat with my pharmacist I have decided to go ahead and try it. I told her I was coming to her with my questions as her opinion is unbiased and I'm unsure if my neuro's is?? She was able to alleviate some of my concerns so I am going to give it a go and hope for the best!!

        I hope that it helps you all as well!!!

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          #5
          FWIW, the hair loss happens because it interrupts the hair growth cycle. You know how hairs grow and naturally fall out? It makes all of the ones that would fall out in, say 6 months, fall out in a couple of weeks. I went through it; it was startling, but it really did stop and my hair is totally normal now. I also went 6 months + losing one hair or so a day after the crazy hair loss, which was the opposite side of the coin.

          I'm no longer on it, but I wouldn't worry too much about the hair unless your hair is already quite thin. It feels much more dramatic than it is. But, I totally get not wanting to lose your hair. There are drug options, it's OK to be vain. I am.

          I also had bowl issues on Aubagio, but never had a poo I couldn't make it to the bathroom with. It's weird; it's also a side effect for Tecfidera, and I never had a single problem with that med. It's all in how your body handles it.

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            #6
            So I changed my mind again on starting the Aubagio. I've decided to hold off for now. I'm getting married in June 2015 and I'm just too worried about this hair loss issue for the wedding. Crazy I know but I am totally freaked out by it because I've already had quite a bit of hair loss when I started the Rebif so I'm just to scared right now. Once the wedding is done and over with then I will definitely start taking it. So for now I will stick to what I know. Hopefully they aren't too peeved with me at the one to one program for getting started in the program and now holding off

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