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Limited choices, Betaseron or Avonex?

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    Limited choices, Betaseron or Avonex?

    Hello,I have just been diagnosed and am still in the hospital getting steroids. This all happened while working in Japan so I'm still in Japan going through this. (I'm from USA)


    Anyway, in Japan the only choices I have are Betaseron or Avonex. I'm horribly scared of needles and I'm so lost at what to do. Everything has happened so fast. They want me to make my choice around New Years day.


    Any tips or recommendations will be appreciated. They seem pretty similar to me besides how often you take them. Is there any big differences I should know?Thank you!!

    #2
    How long are you planning on being in Japan? If it is going to be only a few months you could think about waiting to see an MS specialist in the States. It takes months for most DMTs to build up in your system so waiting a bit wouldn't be a big deal. There's over 12 drugs available in the US and you should have access to them.

    Comment


      #3
      Originally posted by alk View Post
      How long are you planning on being in Japan? If it is going to be only a few months you could think about waiting to see an MS specialist in the States. It takes months for most DMTs to build up in your system so waiting a bit wouldn't be a big deal. There's over 12 drugs available in the US and you should have access to them.

      Thank you for the reply. I was also thinking about that option.

      I want to move back asap after this but I also need to wait for my husband's spouse visa (hes Japanese) to be approved so it could be somewhere between 5 months to up to a year!

      Is that too long to wait?

      Thanks again,

      Ashley

      Comment


        #4
        Originally posted by alk View Post
        It takes months for most DMTs to build up in your system so waiting a bit wouldn't be a big deal.
        Hi Ashley:

        It's important not to misinterpret what that means. The length of time it takes DMTs to "build up" and reach maximum effectiveness does not mean that it takes that long for them to become effective.

        According to the published research (used to gain FDA approval), both Avonex and Betaseron became (and therefore can be assumed to become, in general) more effective than placebo and more effective than doing nothing in about only 3 weeks.

        The "maximum effectiveness" detail is misleading. That's like saying that since it takes months to save up $50, there's no hurry to start saving. If you start saving a dollar a week now, in 3 weeks you'll have $3. In a year you'll have $50. But if you wait a year to start saving, in 3 weeks you'll have saved nothing, and a year from now you'll still have nothing because you haven't even started saving yet.

        Bear in mind that 15 to 20 years of research have shown that the earlier a treatment is started, the better the long-term outcome.

        So, if you're like the majority of the research participants and can start to gain effectiveness in about 3 weeks, do you still want to bypass the possible advantage of months of early treatment -- which is more effective than doing nothing -- and wait months to a year before you get back to the US to start?

        There is advantage to be gained almost from the beginning. And as with the savings analogy, in order for a med to get to maximum effectiveness, it has to actually be started. And the sooner you start on a med, the sooner it will reach maximum effectiveness. The longer you wait, the longer it will be until a med reaches maximum effectiveness.

        You can't be at maximum effectiveness a year from now if you don't even start until a year from now. Possible benefit 3 weeks from now or a year from now? You'll have to decide.

        I was on Avonex for several years and liked it just fine. Back then, the only option was the mix-it-yourself kind. Now there's prefilled self-inject and prefilled auto-inject versions; you'll have to find out what's available in Japan.

        Avonex is just as effective as Betaseron, but there's only one injection per week. And the deeper injection means that there are very few injection site reactions vs. the shallower injection of Betaseron, which you also have to take more often.

        Whatever choice you make is fine as long as you can live with the consequences. And yes, if you start on Avonex or Betaseron, you can still change to a different med if you want to when you get back to the US.

        Comment


          #5
          Originally posted by jreagan70 View Post
          Hi Ashley:

          It's important not to misinterpret what that means. The length of time it takes DMTs to "build up" and reach maximum effectiveness does not mean that it takes that long for them to become effective.

          According to the published research (used to gain FDA approval), both Avonex and Betaseron became (and therefore can be assumed to become, in general) more effective than placebo and more effective than doing nothing in about only 3 weeks.

          The "maximum effectiveness" detail is misleading. That's like saying that since it takes months to save up $50, there's no hurry to start saving. If you start saving a dollar a week now, in 3 weeks you'll have $3. In a year you'll have $50. But if you wait a year to start saving, in 3 weeks you'll have saved nothing, and a year from now you'll still have nothing because you haven't even started saving yet.

          Bear in mind that 15 to 20 years of research have shown that the earlier a treatment is started, the better the long-term outcome.

          So, if you're like the majority of the research participants and can start to gain effectiveness in about 3 weeks, do you still want to bypass the possible advantage of months of early treatment -- which is more effective than doing nothing -- and wait months to a year before you get back to the US to start?

          There is advantage to be gained almost from the beginning. And as with the savings analogy, in order for a med to get to maximum effectiveness, it has to actually be started. And the sooner you start on a med, the sooner it will reach maximum effectiveness. The longer you wait, the longer it will be until a med reaches maximum effectiveness.

          You can't be at maximum effectiveness a year from now if you don't even start until a year from now. Possible benefit 3 weeks from now or a year from now? You'll have to decide.

          I was on Avonex for several years and liked it just fine. Back then, the only option was the mix-it-yourself kind. Now there's prefilled self-inject and prefilled auto-inject versions; you'll have to find out what's available in Japan.

          Avonex is just as effective as Betaseron, but there's only one injection per week. And the deeper injection means that there are very few injection site reactions vs. the shallower injection of Betaseron, which you also have to take more often.

          Whatever choice you make is fine as long as you can live with the consequences. And yes, if you start on Avonex or Betaseron, you can still change to a different med if you want to when you get back to the US.
          Wow, thank you so much for all the information. You have made me really make up my mind to use Avonex. I'm very scared of needles so that is mostly why I would rather do it once a week.

          I now know I'm making the right choice not to wait!! As you said saving a little money is better than saving none.

          They only have the prefilled syringe here, no auto injector. Which is a little more scary for me. I really don't want to see the needle...but it can't be helped.

          Thank you, you gave me confidence

          Comment


            #6
            Originally posted by Ashtastic View Post
            I'm very scared of needles so that is mostly why I would rather do it once a week.

            They only have the prefilled syringe here, no auto injector. Which is a little more scary for me. I really don't want to see the needle...but it can't be helped.
            Originally Posted by jreagan70
            I was on Avonex for several years and liked it just fine. Back then, the only option was the mix-it-yourself kind.

            Like jregan70 I started on the 'mix-it-yourself' Avonex. Strangely the act of mixing the med seemed to give a feeling of control, but I still couldn't inject myself - true needle phobic here. My husband, my mother and even my daughter have done the injections for me.

            Even though I "felt better" on Avonex I switched to orals as soon as they were approved.

            Good luck on your decision.

            Comment


              #7
              Think of it as a decision you're making for this period in your life. You won't have to do it forever, just for now until you get back to the states where you'll have more choices.

              Comment


                #8
                I was afraid of Avonex's big needles. Avonex is an intra-muscular (IM) injection and much bigger than Betaseron's sub-cutaneous (sub-Q) is much smaller.

                But, back when I was making the decision, Avonex did not have an auto-inject option, so that would make it easier. Another advantage of Avonex is that it is only a once per week injection, rather than Betaseron's every-other-day.

                I do applaud your decision to begin now, rather than wait until you are able to return to the US. I was undiagnosed for almost two years, so was not able to begin a med until then. I always wonder if some of my residual symptoms would be less if I'd been able to begin sooner.
                ~ Faith
                MSWorld Volunteer -- Moderator since JUN2012
                (now a Mimibug)

                Symptoms began in JAN02
                - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                .

                - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                Comment


                  #9
                  Thank you everyone for your encouragement and for sharing your own experiences.

                  I know once I get back to America I can change if I need to so hopefully I can handle it for half a year or so, or maybe I will even find that I like it!

                  I will start after I get out of the hospital, which isn't decided yet but it will be after New Years so I continue to watch YouTube self injection videos and such to mentally prepare myself. It actually helps a lot. lol

                  Thanks everyone!

                  Comment


                    #10
                    Avonex PS offers a shorter needle now

                    1" 25 gauge.

                    I went on Avonex for the same reason - because of decreased injection frequency. I've been on this drug for 3 years now.
                    Dx RRMS 2008/Kesimpta Feb 2023
                    UNbalanced Dog Trainer - Accredited pet dog training instructor

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