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Aubagio and SPMS?

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    Aubagio and SPMS?

    Anyone have any info on Aubagio and SPMS? My neuro would like me to take it, but I am having a really horrid time with Nerve Pain and find it counterintuitive to go on a med that is (1) not meant to treat my disease and (2) can cause nerve pain.

    Thanks!

    #2
    As far as I know, Aubagio is for relapsing MS.
    This is a quote from the Aubagio web site about how the med works:

    AUBAGIO works differently than other MS therapies. It is believed to block the replication of overactive immune cells (including T- and B-cells) that attack and damage the nerves in the central nervous system.

    Sounds like your doctor may believe that the "blocking" would help slow your progression.

    As for the nerve pain, I can only relate my experience. I've had Trigeminal Neuralgia for (way too many) years. That is some hideous nerve pain. After 2 yrs, 4 months on Aubagio I have not had any increase in that nerve pain.

    Best wishes - whatever your decision is.
    "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
    Verin Mathwin, The Wheel of Time by Robert Jordan

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      #3
      Originally posted by HereIam View Post
      Anyone have any info on Aubagio and SPMS? My neuro would like me to take it, but I am having a really horrid time with Nerve Pain and find it counterintuitive to go on a med that is (1) not meant to treat my disease and (2) can cause nerve pain....
      I was on it a few years ago and I have SPMS. I think it made me nauseated, but do not remember any nerve pain. Have you read up on the web site for Aubagio??
      Peace to all,
      LM
      RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')

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        #4
        I've been on Aubagio about 1 1/2 years now. It hasn't given me nerve pain. I think the most common side effects are GI problems and hair loss. I think I likely have SPMS now because I don't have relapses at all anymore. My doctor still defines me as having RRMS though.

        I still have some GI issues and I started taking biotin supplements to counter the hair loss and my hair is actually thicker and healthier than it has ever been.
        Take care, Wiz
        RRMS Restarted Copaxone 12/09

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          #5
          Thanks to everyone who posted advice and experience on Aubagio.

          I finally started it this week... and failed. Took first dose on Wednesday and about a half hour after taking the dose, my mouth, tongue and lips went numb. I call the One on One nurse who put me through to the pharmacist who put me through to a Novartis safety person. They told me it was nothing to worry about, but that I should call my neuro.

          I didn't call because he's a pain in the brain to get to

          So, I took a dose on the second day. 1/2 hour later my lips tongue and mouth went numb and I got a feeling of pins and needles being stuck in my hands, arms and feet. It was really intense. I called the neuro office and the neuro on call said "you are done, this is an allergic reaction," and he told me I didn't need a washout, they do that only for liver problems.

          Well, I still have the pins in needles in my hands and at times a tightness in my throat and also spells of what I'm sure is high blood pressure.

          So, does anyone know if taking only 2 doses means it won't be retained for 2 years, and these symptoms will fade away in not too much time?

          Thanks!

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