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Looks like Lemtrada for my son :(

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    Looks like Lemtrada for my son :(

    Hello all,

    After Avonex (never worked) Tysabri (A Godsend, worked for 7 1/2 years) and Tecfidera (never worked) we know are moving to Lemtrada.

    I must say this scares me half to death, so if ya'll could please give me your experiences etc., it would be greatly appreciated!!
    Dedra
    Son with MS

    #2
    Hi Dedra I can only imaging the thoughts going through your head at the moment, its bad enough having to decide these drugs for yourself other than for one of your kids.

    I am currently deciding weather to go off tysabri and go on lemtrada and I'm having a hell of a time deciding, but in the end I will go with what my neurologist recommends.

    Why is your son going off tysabri ?.

    Also when reading reviews on lemtrada you tend to get a lot of negative reports rather than positive, I think this is as if everything is going good we don't report about this we enjoy our lives, but when we have problems we jump straight on the computer and report out problems good luck with your decision Craig

    Comment


      #3
      I have documented my journey in a thread you can read - and agree reading up on these different drug effects can be a downer.

      http://www.msworld.org/forum/showthr...uly-13-17-2015

      I went with Lemtrada based mostly on my neurologist recommendation of this as the best option for me at this time.

      Comment


        #4
        Originally posted by D_HOLLAND View Post
        Hello all,

        After Avonex (never worked) Tysabri (A Godsend, worked for 7 1/2 years) and Tecfidera (never worked) we know are moving to Lemtrada.

        I must say this scares me half to death, so if ya'll could please give me your experiences etc., it would be greatly appreciated!!
        Dear OP, I just posted about my Lemtrada experience; It will show up shortly. Don't be scared half to death; be hopeful! Tysabri was my Godsend while I was on it, but after seven years on Tysabri and too high of a JC virus titre, my neuro became concerned about PML with me and required me to go off of it. Gilenya did not work at all; I had two severe relapses while on it awaiting FDA approval for Lemtrada to hit the market. By the time I got Lemtrada I was in a full-blown relapse of epic severity to me (balance completely shot, vertigo, speech disturbances, swallowing difficulties, you name it).

        I went into Lemtrada treatment using a walker at medical personnel insistence because they determined me a fall risk.

        Because of the high dose steroids administered during Lemtrada, the relapse was vanquished, and after months of physical and speech therapy, I recuperated back to nearly pre-relapse function levels. I credit the Lemtrada for keeping me relapse free the last two years. Best of all, no needles, no pills to remember to take (except for the Acyclovyr anti-viral med they put me on as a precaution against shingles).

        Try not to worry too much, and look for the hope this drug offers.

        Comment


          #5
          Originally posted by dastardly View Post
          Hi Dedra I can only imaging the thoughts going through your head at the moment, its bad enough having to decide these drugs for yourself other than for one of your kids.

          I am currently deciding weather to go off tysabri and go on lemtrada and I'm having a hell of a time deciding, but in the end I will go with what my neurologist recommends.

          Why is your son going off tysabri ?.

          Also when reading reviews on lemtrada you tend to get a lot of negative reports rather than positive, I think this is as if everything is going good we don't report about this we enjoy our lives, but when we have problems we jump straight on the computer and report out problems good luck with your decision Craig
          Chris, my son's name is Chris also, but he is an adult, 33 years old, diagnosed at 23. Unfortunately he is JVC positive and his number go too high for his neurologist so he had to quit

          He starts his infusions 9/19 so I will keep you posted!
          Dedra
          Son with MS

          Comment


            #6
            Thank you, trying to be hopeful!!
            Dedra
            Son with MS

            Comment


              #7
              Well, three weeks post infusion and praise Jesus all is going well

              I am so relieved but I know there is still a long way to go!! Goes for his first blood work in two weeks so anxious for those results.

              He seems to be doing extremely well, no side affects other than being tired
              Dedra
              Son with MS

              Comment


                #8
                Goldfinch, I wish so bad I could have the good experience that you are having. And the thing is, if I can get rid of this fungal infection and all the crazy other stuff that is happening to me maybe I will.

                Some days I am really down, (like today) and I think it is never going to end but on better days I think ok, I am just that one in 10,000 or so that has some bad luck with a drug and when we get all these different things figured out I will be great!

                After reading all the success stories like yours, I never ever considered that I would have any problems. But just like all the success stories, you have to consider the not so successful story like mine and it makes it sooo hard.

                I did my homework before Lemtrada, I studied I researched but the bottom line is I just didn't think anything would happen to me.

                I'm not giving up, I'm fighting as hard as I can. I was like you, my titre # for the JCv was high and I had to do something and everything except for TY just made me sicker. It's just not an easy choice to make. However, I don't feel like I should have stayed on TY either because I could be here today talking about how PML nearly killed me & about how disabled I am.

                The only thing that I wish is that I could have had more time to see what Lemtrada does in 50+ year old women after a year or two because it seems my age and being a woman is the most at risk for more side effects, NOT A MEDICAL FACT just my opinion.

                Good luck to all of you dealing with making this decision. I think my bottom line opinion is, if you can keep taking what you are on, stay on it for a little while longer. Research more about Lemtrada and the long term effects, be patient. Good luck

                Comment


                  #9
                  Originally posted by D_HOLLAND View Post
                  Well, three weeks post infusion and praise Jesus all is going well

                  I am so relieved but I know there is still a long way to go!! Goes for his first blood work in two weeks so anxious for those results.

                  He seems to be doing extremely well, no side affects other than being tired
                  Well thats good news so far so good (sorry "Gday" all) hope he keeps improving and only clear sky and great sunsets ahead Craig

                  Comment


                    #10
                    Hi D_HOLLAND has your son started lemtrada or did you chose a different journey

                    Comment


                      #11
                      I keep monitoring this thread for good and bad news about Lemtrada and everything patients experience with the drug. What can be scary about the infusions? Tysabri is infused and it known to have issues with JCV (NOT JVC) and possible death. What can be more frightening than that ?
                      Can someone explain ?

                      Comment


                        #12
                        Hi Dedra,
                        I hope Chris is doing well ! How was his blood work-hope great ?
                        I am thinking good thoughts and sending prayers his way
                        Linda
                        Linda

                        Comment


                          #13
                          Originally posted by lindaincolorado View Post
                          Hi Dedra,
                          I hope Chris is doing well ! How was his blood work-hope great ?
                          I am thinking good thoughts and sending prayers his way
                          Linda
                          Well it's been three months, Chris is still tired all the time, but doesn't see to have any other side affects. I am concerned about his blood work, but neuro says it was what was expected.

                          The low numbers, CD4, Absolute CD4+ and Absolute Lymphocytes are still extremely low but are going up slightly every month.

                          I'm not concerned with the high numbers that keep going up:

                          MPV -14.1 - should be 7.5-11.5
                          Absolute Neutrophils 9106 - should be 1500-7800

                          Any ideas?
                          Dedra
                          Son with MS

                          Comment


                            #14
                            Originally posted by D_HOLLAND View Post
                            Well it's been three months, Chris is still tired all the time, but doesn't see to have any other side affects. I am concerned about his blood work, but neuro says it was what was expected.

                            The low numbers, CD4, Absolute CD4+ and Absolute Lymphocytes are still extremely low but are going up slightly every month.

                            I'm not concerned with the high numbers that keep going up:

                            MPV -14.1 - should be 7.5-11.5
                            Absolute Neutrophils 9106 - should be 1500-7800

                            Any ideas?
                            I meant I am more concerned about the high numbers
                            Dedra
                            Son with MS

                            Comment


                              #15
                              Hi All.
                              I have been going through the process for roughly 6 months now - Lemtrada or not !!!!!!

                              Have finally in the last couple of weeks decided to persevere with Tysabri a while longer ( for various reasons)
                              One of the things that occurred to me was that at some point in the next few months i may be able to take Ocrevus . I'm not sure when it will be available in australia but when i consider if i start Lemtrada i can't switch/take another treatment for roughly 48 months (after 1 treatment) it seems more reasonable to wait for the treatment that is so far showing good results in trials for spms and ppms as well as rrms with less side effects.

                              At the moment it looks like this treatment will be available in the states (i believe) in about March - thats only 2 months away- I just hope that all of us currently considering starting Lemtrada also consider this as an possible alternative treatment.

                              Just my 2 cents worth,
                              All the best.

                              Comment

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