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    Anything that I should know?

    My neuro decided that I NEED to be on a DMT and that Aubagio was the one for me. But I am feeling fairly good right now (stopped Gilenya in May of last year after taking it for 5 years). I just received the first shipment od Aubagio. I really am not interested in taking another poison. I understand all the arguments for taking a DMT but I am just not feeling it. Add in the fact that I was dx'ed 23 years ago and am still walking, driving, and can pass for 'normal' on most days .

    I have read all of the threads on Aubagio. And all of the literature that the company sent. But I am asking for a few tips from people who have / are taking it.

    Eat protein when taking it?
    Mid-day best time, or does it even matter?

    I am certain that I will have more questions after I start it, but thanks in advance for any information

    #2
    Hi taking DMD is a tough decision, I waited years before starting any DMD's ,I felt I was ok dealing with what I had been delt, now I wish I had started DMD's years ago, they don't fix your problems they are to keep you at the level you are now, if you get better with them great but my Neurologist always says we are treating so you don't get any worse good luck with your choice talk to your Dr's family and friends and then the choice is yours good luck Craig

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      #3
      I resisted taking any DMT also, for much the same reason you give. Still,I was finally convinced to take the plunge & here I am. 2 yes, 3 mo on Aubagio.

      What to expect. Hmmm. Expect to drink more water. There's a small percentage that have gi unhappiness, but drinking extra water can nip that in the bud. Grab some Immodiun if you'd like to be prepared, I never needed it, at all.

      There are no dietary requirements or suggestions and no time of day is better or worse than any other. Try to be mostly consistent about time of day, mainly for easier remembering to take it.

      Hair thinning is an oft heard about sx, but only 3% actually reported any. Maybe it IS that rare? maybe people stink at reporting? Me? Super mild case of that, just a few extra strands in the hairbrush, nothing to write home about.

      Overall I'm glad I started. I feel stronger for having done something pro-active about my crazy life. Even better, no relapses & I've had better MRI reports than ever expected. The progression that started after 15 yrs of silence has greatly reduced.
      Good luck.Keep us posted if you will.
      "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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        #4
        4 years

        I have taken Aubagio for 4 years now. I just had my annual MRI and no new lesions. Haven't had any new lesions since I started Aubagio 4 years ago.

        I have had some stomach issues and high blood pressure but I don't know if it is related to Aubagio.

        I had not had any MS symptoms for years and then I was hit hard with dizziness, double vision and bad balance. Had an MRI which was inconclusive. The symptoms improved but did not go away. A year later, the dizziness got worse and another MRI showed new and active lesions. Aubagio was newly released at the time and I wanted a DMT that wasn't injections.

        It has worked so far but I wish I didn't have to take any medication. I'm just afraid to stop.

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          #5
          Thanks everyone .

          I 'bit the bullet' and started taking Aubagio on Tuesday. I decided to take it at night, so I have had 3 doses now. I am attempting to be a 'good patient' and will give this an honest try but have to admit that I am looking hard for any side effects. So far all that I have noticed was a slight headache (which could have been caused by anything) and itching (but I was itching before I started taking it so ...).

          Since my MRI's have been the same for several years I don't understand how my neuro intends to determine if this drug is a success or a failure. I know that I will call it a failure if side effects show up that I am not willing to live with

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            #6
            This sounds so much like me. I took my first aubagio today. After 8 years of no meds my new neuro thought being on one would be a benefit. My brain mri is stable, but I have 3 lesions that are right together in my cervical spine and she is worried that if they grow or more develop things won't go well.

            I am very concerned about side effects, they are the reason I stopped taking meds all those years ago.

            If I am going to have problems, how long until the side effects begin? I know everyone is different but how many doses before trouble begins? I know I also can't deal with them and would stop the drug. Last time the side effects made me feel worse than the ms.

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              #7
              Less than 2 weeks on Aubagio and I have decided to stop taking it.

              Too much already! I actually felt pretty good before I started it, but now I truly feel like crap. Even dh has noticed that I feel awful (he is not very observant and is going thru a lot of medical stuff himself).
              Too exhausted to do anything. Acid reflux like I have never had before. Nauseous. Headaches. Nose running like a leaky facet.

              I am simply not willing to continue taking this. I spoke to a one to one rep who told me that it will take 3 months to reach 'saturation' levels in my body. How much more terrible will I feel by then?

              I feel like a 'failure' here and dread telling neuro that I have given up on this, but while I know that DMDs aren't supposed to make us feel better I refuse to feel this worse for the CHANCE that it will keep me from having more damage done.
              IMO this is worse than my MS has ever been .

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                #8
                Hi,
                Try not to feel like a failure for you deciding whats best for you.
                Docs are there to advise us but is is up to us whether we agree with that advice or query something else.
                I stuck out on a treatment many years ago for about 4 years but finally quit because it too was worse than my ms. I haven't regretted this ever.
                There are many more treatments available now. you may tolerate something else better.
                All the best.

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                  #9
                  You're not a "failure". Everyone has different reactions to medications.
                  I completely second what Caroline says. Your body, your choice, you doc should help you & back you up. There are many choices out there, don't give up.
                  "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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