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MS MEDS DON'T SEEM TO WORK FOR ME!

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    MS MEDS DON'T SEEM TO WORK FOR ME!

    RECENTLY I STARTED TYSABRI AFTER COPAXONE AND BETA-INTERFERONS DIDN'T WORK FOR ME. I JUST RECEIVED A CALL FROM MY DOCTOR STATING THAT I HAVE NEW AND ACTIVE LESIONS ON THE BRAIN AGAIN. TRICKY THING IS, I'VE BEEN FEELING SO MUCH BETTER.
    DOES ANYONE ELSE HAVE A PROBLEM WITH MS MEDS NOT WORKING FOR THEM, AND WHAT IS THE NEXT STEP??

    #2
    I´m two weeks into copaxone and am wondering how and how much time had passed when you and your doc decided that copaxone wasn´t working.

    Comment


      #3
      Rituxan

      First-- it takes about 6 months for tysabri to come up to speed for full effectiveness. After switching from a med that wasn't effective enough then waiting through a dry out period with no drugs, then going through the start up period for tysabri to reach full effectiveness a persons MS is in a very turbulent time, actually they often call the first relapse on Tysabri from this time before MS settles down again. From damage that was done during that time. I am not certain how long you used Tysabri, these lesion may be just normal from that turbulent time. Depends what your doc says.

      Second--I know 2 people who started using Rituxan after Tysasbri didn't work for them. One has used Rituxan for about a year and her doc had told her she was SP, but after Rituxan her doc is thinking that she might not be SP and the girl she is really really exited about rituxan after thinking nothing would help her MS any more.she thought she was end of the line SP. Tysabri hadn't worked for her.
      but Rituxan really is working for her.

      the 2nd person just had her first infusion she thinks rituxan is pretty good she is seeing improvement--she had a very bad relapse after stopping copaxone because she didn't think she needed a dmd & i think there were some insurance problems so she stopped copaxone and BAMM she got the worst relapse she has ever had..tysabri didn't work for her and the doc is hopeful that rituxan will return her MS to the level of activity it was at before she stopped copaxone.

      thats one path people went to when tysabri didn't work for them.

      Rituxan is a twice yearly infusion that also has the risk of PML but a lower risk than Tysabri.

      Next year Lemtrada should be released. Lemtrada has been found to be 80% effective in treating MS. iY's currently used to treat Leukemias, undere the brand name Campath or by a genereic name Alemtuzumab. Just completing Phase III trials to prove its effective in MS.

      http://www.msworld.org/forum/showthr...light=Lemtrada

      http://www.msworld.org/forum/showthr...light=Lemtrada

      http://www.msworld.org/forum/showthr...light=Lemtrada

      http://www.msworld.org/forum/showthr...light=Lemtrada

      http://www.msworld.org/forum/showthr...light=Lemtrada

      And Rituxan which is currently available

      http://www.msworld.org/forum/showthr...hlight=Rituxan

      And there is always the immune suppressants like Novatrone, cellcept things that were used before Tysasbri.

      So tysabri isn't an end of the line med.
      xxxxxxxxxxx

      Comment


        #4
        On the coopaxone site it says that copaxone takes 6-9 months to reach full effectivenes..i forgot if it was 6 or 9 months but it is somewhere in that range. uit becomes partially effective immediately but does not reach full effectiveness for 6-9(?) months.
        xxxxxxxxxxx

        Comment


          #5
          I agree! I saw a fellow MSers pharmacutical collection when I was first diagnosed, and it was a double-tiered lazy Susan. I freaked! I don't know how she had time to do anything but take pills the whole day! I have stripped my meds down to the bare minimum. I always ask my neuro if I can take something on an as-needed basis, and most of the time, you can. I really need the DMD, but the rest of the stuff are more like luxury items when absolutely needed. My love for my DD, exercise, venting at this site, eating lots of raw veggies/fruits and exercising have come to be my M.S. drugs of choice.
          Tawanda
          ___________________________________________
          Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

          Comment


            #6
            Originally posted by chelseapop View Post
            RECENTLY I STARTED TYSABRI AFTER COPAXONE AND BETA-INTERFERONS DIDN'T WORK FOR ME. I JUST RECEIVED A CALL FROM MY DOCTOR STATING THAT I HAVE NEW AND ACTIVE LESIONS ON THE BRAIN AGAIN. TRICKY THING IS, I'VE BEEN FEELING SO MUCH BETTER.
            DOES ANYONE ELSE HAVE A PROBLEM WITH MS MEDS NOT WORKING FOR THEM, AND WHAT IS THE NEXT STEP??
            As of right now, I am not on any therapy because none seem to be working. My doctor put me on pulse steroids until a new therapy comes out. Just stareted, so hoping it does some good while waiting.

            Comment


              #7
              Originally posted by 0485c10 View Post
              On the coopaxone site it says that copaxone takes 6-9 months to reach full effectivenes..i forgot if it was 6 or 9 months but it is somewhere in that range. uit becomes partially effective immediately but does not reach full effectiveness for 6-9(?) months.
              Do you have a link? I can't find it on the shared solutions site (doens't mean it's not there, of course), and have always heard 3 months from other sources. ???

              Comment


                #8
                my neuro told me it takes about 9 months for copaxone to be fully theraputic. and thats what the nurse at shared solutions also told me on the phone when i first started the medicine it takes about 9 months.
                Dx: 08/09

                Copaxone: 09/09

                Comment


                  #9
                  Originally posted by Temagami View Post
                  I´m two weeks into copaxone and am wondering how and how much time had passed when you and your doc decided that copaxone wasn´t working.
                  I had been on copaxone for 2 years, during the full 2 years, still had the same problems that never went away. had 6 3-day iv steroid treatments in that time. Guess the last one affected both legs and speech and had to go on steroids for 5 days. That's when he decided that it was no longer working if it really ever did.

                  Comment


                    #10
                    Originally posted by Steelerfan09 View Post
                    my neuro told me it takes about 9 months for copaxone to be fully theraputic. and thats what the nurse at shared solutions also told me on the phone when i first started the medicine it takes about 9 months.
                    My neuro and the Shared Solutions nurse told me 3 months. I guess there is some debate on the topic!

                    Comment

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