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feeling frustrated - years in and symptoms getting worse and worse

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    feeling frustrated - years in and symptoms getting worse and worse

    I've been on Aubagio for almost 3 years. I've had the typical side effects (hair thinning, GI issues, etc) but recently they have become less manageable. I now have a bald spot on my scalp an inch and a half long. I keep getting boils. I have a reoccurring rash on my foot. Sometimes I itch uncontrollably. I have nerve pain in my thighs that brings me to tears. I have a dr appointment next week and I'm going to discuss stopping Aubagio. I know it's vain but I just can't have all of my hair fall out. This has been the deal breaker for me. Has anyone experience worsening symptoms on Aubagio this many years in?

    #2
    For me, it came down to quality of life. The side effects of the drugs I was taking was worse than coping with the disease.
    Karen

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      #3
      Also for me, it came down to quality of life. If I'm going to be unhealthy and/or unhappy, I'd rather it be because of the disease itself and not from the treatment. Over the years, I've been on 12 different medicines for MS, 16 if you include different forms of some of the same medicines (Aubagio wasn't one of them). They either weren't effective, were actually damaging my health, or made me too miserable to continue. In the end, quality of life is more important to me.

      So really, it doesn't matter whether anyone else on the planet has had symptoms from Aubagio, or when, or what they did about it. It only matters what your quality of life is, what trade-offs you're willing to make, and what you want to do about it.

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