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    Neutralizing Antibodies on Avonex, now what to do...

    Been on all the CRABs & Cytoxan. Just tested positive for the Neutralizing Antibodies (NABs) while on Avonex which has been pretty stable for 4 years.

    Ty isn't an option because of the Cytoxan history. Dr mentioned Gilenya as the only choice, besides nothing with pulse steroids and Cytoxan again if it takes off.

    Gilenya prescribing information is pretty dang scary when reading it all...and then thinking about the fact that it's been on the market for such a short period and therefore doesn't have as much safety data.

    With a family to think about, I sort of feel guilty if I do nothing at all. I also feel worried for them if I do something and have more bad luck. All of the CRABs have caused my body to go into a defensive posture against them. Cytoxan worked, but it also put me out of commission for a 1-2 week period each month. Not to mention there is always risk with the chemo drugs.

    SO, where to go now? I need some opinions to help me with this decision. Thanks in advance.
    Take Care,
    SpeckledBrain

    #2
    While the warnings for Gilenya are a little scary, I don't think they are as bad as the Cytoxan. I would give it a try and hope for the best.
    Bill
    Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

    Comment


      #3
      Thanks for the reply. I never thought about comparing the Cytoxan prescribing info. I was in a major progression at the time of the Cytoxan, so we were hoping for anything to stop it. Cytoxan did put it into a huge lull and the Avonex has maintained it...or so it seems. Lately things have started again and so the reason for the blood tests and now the change that will be coming.

      The big thing about Cytoxan that we don't find scary, is it's long term use with a ton of data to back up it's relative safety.
      Take Care,
      SpeckledBrain

      Comment


        #4
        I hear you about being worried with Gilenya.

        With that said I have been on it since Dec 14th. I was on Avonex for only 7 doses (couldnt do the long needle) then on Betaseron for a few months and it made my hair fall out plus my MS was very active so neuro thought Gilenya might be best for me. SO here I am over just 3 months later and doing well.

        Yes I am concerned about the side effects but I don't know what else to do. My MS was just so active and only being diagnosed June 30, 2010 I felt like I was losing it. After being on Gilenya since Dec I haven't had one new symptom or relapse.

        I am not say Gilenya is the best thing next to sliced bread but it is much easier for me to take and so far....no side effects. Only time will tell.

        CrazyCatLady
        MS Does Not Define Me.....My Love of Tea Does! LOL!

        Comment


          #5
          Thanks for your reply. I'm glad to hear that it's working for you. I think we all hate the needles. I always had to have a family member stab me.

          I think we're more afraid of the unpredictable side effects or future findings. Kind of like when PML became an issue out there. With a family to worry about, if something went wrong, them I would have something else to blame myself for. And if I don't do something that could slow progression, then I'll have another side of the blame on my shoulders. Dang if I do, Dang if I don't.
          Take Care,
          SpeckledBrain

          Comment


            #6
            Originally posted by SpeckledBrain View Post
            . Dang if I do, Dang if I don't.
            I think what helped me decide about Gilenya was thinking about something my neruro told me. He said when Betaseron came out, people went into a lottery to get to be the first ones on it. Everyone wanted it NOW. Of course the medication had only been studied for a few years and it was the first med out.....but people still wanted it .....now! They didnt care about waiting for what side effects might happen.

            Of course now we know better, like what happended with Tysabri but still this is what helped me. My MS was just kicking my butt and it had to stop. I think a lot about side effects and now I really am trying to eat better and overall take better care of myself, somehow thinking that will help.

            All I know for sure is I feel better after being on Gilenya for 3 months. I am not my old Pre-MS self but I feel like I stopped getting worse.

            Either way it is scarey. Like you said Dang if you do and Dang of you don't. For me I think the bigger Dang was if I didnt, so I did.

            CrazyCatLady
            MS Does Not Define Me.....My Love of Tea Does! LOL!

            Comment


              #7
              Thanks for the reply again. We're trying to decide on which way to go now. Sorry I didn't reply sooner.
              Take Care,
              SpeckledBrain

              Comment


                #8
                I think the 'few' years for Betaseron was more like twenty years. Now things are coming to market sooner, about fifteen years.
                Bill
                Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

                Comment


                  #9
                  Yea. That's what makes us nervous. Gillenya was only 2 years in trial from what the doc said, and only 5 months out....should be 6 now. So, we'll eventually make a decision I guess. We're hanging out again, reading the groups to get a feel on it all.

                  In another subject:
                  I used to post all the time. For some reason my post count is down now (and I can't find old posts) and it says my posts must be moderated...and they take what seems like forever to show up. Did I miss something? I did have my user name changed a couple of years ago.
                  Take Care,
                  SpeckledBrain

                  Comment


                    #10
                    Originally posted by wkikta View Post
                    I think the 'few' years for Betaseron was more like twenty years. Now things are coming to market sooner, about fifteen years.
                    Sorry I mis-spoke, I assumed Betaseron was tested like today's meds, I didnt know it was tested for 20 years before being FDA approved.

                    I couldn't find the FDA standards for back then online, I stand corrected.

                    My neuro was the one who told me that Gilenya was in trials for only 4 years before being approved. I would rest easier knowing is has been tested for 15 years if that is true.

                    Where did you see that info?? I would love to bring it to my neuro's attention!!!!

                    CrazyCatLady
                    MS Does Not Define Me.....My Love of Tea Does! LOL!

                    Comment


                      #11
                      Originally posted by SpeckledBrain View Post
                      Yea. That's what makes us nervous. Gillenya was only 2 years in trial from what the doc said, and only 5 months out....should be 6 now.
                      Yeah that is something like I thought. Wkikta said it was tested for FIFTEEN years. It made me feel a whole lot better but I can't find info supporting that.

                      CrazyCatLady
                      MS Does Not Define Me.....My Love of Tea Does! LOL!

                      Comment


                        #12
                        Originally posted by Sparky10
                        MSWorld has become a fully-moderated message board. <snip>That means that a team of Moderators manually checks every post for content before it appears.
                        <snip>
                        Many posts have been deleted due to past space issues.
                        That all makes sense, thanks.
                        Take Care,
                        SpeckledBrain

                        Comment

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