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    Going back to Ty

    I had to stop Ty in Dec. because of a high titer number(3.5).

    After a discussion with my Neuro and infusion nurse, we decided my risk for PML was too high, although they left the decision up to me.

    I can say now I should have never stopped. I quickly got much worse even though I started taking daily pills, and shots each month.

    For those who are thinking of a change, give it a second thought. I am looking at starting Ty again, but it depends on what my blood test shows. I might not be able to do Ty again. I will go to 8 weeks, and a MRI before each infusion for my Neuro to check first.

    It won't fix the damage, but I hope to stabilize things again.

    #2
    Originally posted by Tomjadg View Post
    I had to stop Ty in Dec. because of a high titer number(3.5).

    After a discussion with my Neuro and infusion nurse, we decided my risk for PML was too high, although they left the decision up to me.

    I can say now I should have never stopped. I quickly got much worse even though I started taking daily pills, and shots each month.

    For those who are thinking of a change, give it a second thought. I am looking at starting Ty again, but it depends on what my blood test shows. I might not be able to do Ty again. I will go to 8 weeks, and a MRI before each infusion for my Neuro to check first.

    It won't fix the damage, but I hope to stabilize things again.
    Thanks for this. It's good to share our experiences . It may help others

    Comment


      #3
      stopping Ty?

      Hi Tomjadg. I just had my 3rd. infusion and it did not go well. I am thinking of stopping TY.
      My post is titled, New Maybe . It has the problems I have been having since I started Ty. I would greatly appreciate your input. I am still very sick since Monday. Your post has made me question what to do even more. Your predicament is kinda similar to mine, I have not been able to tolerate the other drugs but my neurologist feels that I am progressing way to fast and she feels Ty is the only one that will stop the constant relapses anyway. I am also positive but not real high. Neither one of us have any clear choices, the MonSter is aptly named. I hope your blood tests help you get a clear choice.
      PEACE
      Tortis

      Comment


        #4
        Sorry tortis. I just got around to check this.

        I think everyone is different how they respond to Meds. If you keep getting sick, Ty might not be for you, even though you are a low positive.

        Good luck with your decision.

        Comment


          #5
          Update

          I have begun the Ty infusions again. I have only had two so far, so it will take some time to see if things stabilize like before I stopped.

          I'm getting them every 8 weeks now. Funny how they weren't aware of the study that was done about a longer time between infusions is better as a defense against PML.
          I told them about this in Dec. 2015, but I guess they read up on it since they made it 8 weeks for me. Haha

          Comment


            #6
            Hey Tomjadg,

            sorry your dr wouldn't go every 8 weeks back aways. I followed the Neuro seminar (can't think of the right word ) in Boston well over a year ago when I learned of getting Ty infusions less often. I asked my neuro to let me do it and he agreed and now is really on board with it

            I hope you do well !

            Good luck
            Linda

            Comment


              #7
              Hi Linda

              Good to hear from you. I've followed you for a long time.

              I'm just hoping to stabilize once again. I haven't been able to work, but my dog is very happy and lays with me on the couch all day. Haha.

              Thanks, and continued good luck to you.

              Comment


                #8
                Hey Tom,
                aren't animals great most of the time better than a lot people
                I hope you do even better than just stabilize.. at least, that !!
                Please keep us posted.
                Linda

                Comment


                  #9
                  I too will soon be trying again to space out the infusions. I tried every 6 weeks a year ago and did not have good results so went back to every 4 weeks. But starting this spring, I will try going every 5 weeks. I am waiting until March since I already had the appointments set up and since I work, it is hard to schedule them around work.

                  I have been on Ty for well over 6 1/2 years. My titer numbers have been high. But my last one was only 2.1. I also tried the antivirals to keep my numbers down, no longer take it, so hard to say if it worked. I paid for the Mayo Clinic to do the big fancy white blood cell tests. Cost me over $400, but it was worth it. Showed all type of white blood cells healthy and at good numbers and doing their job. That test kept my doctor from insisting I go off of it. He was trying to talk me out of it every appointment. He no longer does.

                  Just wanted to share.
                  I am doing very well on Tysabri. I strongly feel if it were not Tysabri I would not be here today.
                  Life is good.

                  Wish you all the best.

                  Comment


                    #10
                    Nice to hear from you LL60
                    I hope you do well every 5 weeks and then maybe you can extend it to 6 weeks. I think it's excellent you did that Mayo test and I hope your jcv #s keep going down or, at least, never more than 2.1
                    Good Luck !
                    Linda

                    Comment


                      #11
                      Thanks Linda,
                      I miss chatting with all of you and getting all the great information. Just run out of hours in a day!
                      I will try to check in more often.

                      Comment


                        #12
                        Update

                        I have started Ty again every 8 weeks (2 so far). I also just started taking Ampyra and will see how that goes.
                        Not much else to try.

                        Comment


                          #13
                          Originally posted by Tomjadg View Post
                          I have started Ty again every 8 weeks (2 so far). I also just started taking Ampyra and will see how that goes.
                          Not much else to try.

                          Hi Linda

                          I hate to be a Debbie downer, but just being truthful.

                          I haven't had any improvements or stabilization. Walking and balance are worse. I've been taking Ampyra for six weeks with no improvement
                          I understand everybody is different, but with the good reviews. I was hoping something would help.

                          I have pretty much given up.

                          I hope you continue to do well.

                          Comment


                            #14
                            Hi Guys Im currently JC- and have had 8 infusions @ 4 week intervals, don't know what I would do being JC+ keeping my fingers crossed, I haven't felt any different on TY as if its not working at all but my last MRI came back with positive results lesion in brain "slightly" decreasing in size even though my symptoms seem to be getting worse and Im still waiting for a miracle from the TY good luck everyone Craig

                            Comment


                              #15
                              Originally posted by dastardly View Post
                              Hi Guys Im currently JC- and have had 8 infusions @ 4 week intervals, don't know what I would do being JC+ keeping my fingers crossed, I haven't felt any different on TY as if its not working at all but my last MRI came back with positive results lesion in brain "slightly" decreasing in size even though my symptoms seem to be getting worse and Im still waiting for a miracle from the TY good luck everyone Craig

                              Ummm wrong thread.

                              Comment

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