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    Suggestion for which med?

    Just need a bit of advice from the experts...you.

    My timeline so you know the progression:
    March 2010 was skiing spring break (killed the mountain!), came home and two weeks later had anemia, followed by rapid a downhill slide ever since - no remission at all. EDDS is 6.0-6.5 now. Diagnosed April 23 2011.

    The neurologist wants to start Copaxone, and if that does not work do Tysabri. My reservation is that (from my research) Copaxone takes 6-8 months to start working; Tysabri takes 2-3 months. I fear I do not have 6-8 months to wait for a medication to begin taking effect. Who knows where I will be by then given the rapid progression.

    Is it reasonable to ask the doctor to consider Tysabri as the first line in my case? I am do not address issues well with physicians, but my gut instinct is telling me this is the route I need to take. Advice please?
    Lisa

    #2
    I'm on Tysabri, I started off on Avonex... but my MS isn't as progressive as yours.

    In my opinion, I feel like it's your body it's your decision. Doctors can have their opinion on what's best, but you know what's best for you.

    I would talk to your neuro about what you think about this. Since being on Tysabri, I haven't had any side effects from the medication either, which is a upside compared to Avonex.

    Take Care - Best Wishes
    Ashley Ringstaff
    Living with MS since 8/30/10

    Comment


      #3
      Lisa, I wish I could tell you what to do, but I'm not a doctor nor do I pretend to be one. I will say though, that if you are facing such a rapid decline the sooner you start something the better! All of the drugs used to fight MS (none are a cure) are good choices to start with. Your doctor must have a reason for recommending these two. I'd ask what the reasoning was not to second guess the doctor, just so you have some clarification on the matter. Good luck and keep us posted.
      hunterd/HuntOP/Dave
      volunteer
      MS World
      hunterd@msworld.org
      PPMS DX 2001

      "ADAPT AND OVERCOME" - MY COUSIN

      Comment


        #4
        Lisa, Have you been tested for the JC Virus?
        Ashley Ringstaff
        Ringer1319/RingpOP
        MSWorld Volunteer
        Living with MS since 8/30/10

        Comment


          #5
          Lisa, my doc wanted to do Tysabari as first line due to the aggressiveness he is seeing my tests and prolonged (without any relief or remission) symptoms. I chose Rebif (because Ty scares the poop out of me), but it does seem that you should be able to move toward second line right away with such an agressive brand, assuming you are not at risk (however, know he also told me that if you are JC+ they will consider allowing you to do it for a year anyhow -- def your choice considering the risks).

          Wishing you the best

          Comment


            #6
            Lisa

            Doctors like to play it safe. He recommends copaxone because its safer and the most common MS treatment. I first did Avonex then was going to go on Ty when it came out the first time but decided to have a baby instead. I eventually went on Ty last year and had issues with it (tired, injection allergic reaction etc) so i went on copaxone a few months later

            If I didn't have issues with Tysabri I would probably still be on it even knowing what I know now personally about taking Copaxone. I hate the burning I get with Copaxone about 30 seconds after the injection. I am sensitive to everything so its no wonder the burning lasts 1hr even 6 months after starting Copaxone. Not everyone gets this but let me just tell you I am anxiously awaiting BG12 so I can stop the copaxone.

            Technically a doctor (should not or is it cannot)prescribe Tysabri as a first line of treatment. I was told by my Dr he recommended Ty as it is a more aggressive treatment and I have a more aggressive MS due it being mainly in my spine.

            Do what you think is right. If you feel Tysabri is right because it is more aggressive then push for what you want. Don't do what a doctor wants out of fear/embarrassment or not having enough guts to tell him you don't want to do what he wants you to do. Trust me I have regretted some decisions in the past out of fear of telling a doctor what he doesn't want to hear.

            Hope my 2 cents helps. Best of luck on your decision
            Carrie

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