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LEMTRADA IS NOT GOING WELL FOR ME

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    LEMTRADA IS NOT GOING WELL FOR ME

    I HAVE NOT POSTED BECAUSE I HAVE BEEN SO SICK AND I HAVE BEEN IN AND OUT OF THE HOSPITAL IN VANDERBILT. I KNOW MANY PEOPLE ARE SINGING THE PRAISES OF LEMTRADA BUT I'M AFRAID I CAN NOT SAY I AM HAVING A GOOD EXPERIENCE.

    I HAVE BEEN SO SICK FOR A YEAR AND HALF, I HAVE A FUNGAL INFECTION THAT WE CAN'T CLEAR UP. MY LUNGS ARE INFLAMED AND IT IS VERY HARD TO BREATHE AND IT LOOKS LIKE I MAY HAVE TO HAVE LUNG SURGERY, THEY ARE HARDENING BUT I'M TOO SICK RIGHT NOW TO HAVE THE SURGERY.

    I HAVE JUST HAD thyrotoxicosis AND I AM BATTLING THAT WITH A KIDNEY INFECTION.

    I HAD MY FIRST THERAPY MAY 2015 , I HAVE NOT HAD THE 2ND DOSE BECAUSE I HAVE BEEN TOO SICK BUT I DO NOT PLAN TO TAKE IT EVER AGAIN. I JUST HOPE I LIVE THROUGH ALL OF THIS.

    I WOULD THINK VERY LONG AND HARD BEFORE TAKING LEMTRADA, BUT I ALSO THINK I AM EXCEPTION TO THE RULE BUT VANDY IS SEEING A LOT OF THE LUNG PROBLEMS AND THYROID PROBLEMS AND THE THYROID PROBLEMS ARE NOT JUST YOUR COMMON EVERYDAY HYPO OR HYPER, IT GOES BACK AND FORTH.

    I KNOW TAKING LEMTRADA IS PROBABLY THE BIGGEST MISTAKE I HAVE EVER MADE IN MY LIFE, OH HOW I WISH I COULD GO BACK IN TIME. I WAS WORKING UNTIL LEMTRADA, I ONLY USED A CANE ON OCCASSIOINS AND ON tYSABRI I WAS DOING PRETTY GOOD. THIS HAS JUST DEVESTATED MY LIFE.

    GOOD LUCK ON WHATEVER YOU DECIDE.

    #2
    I am so sorry, regigirl, you are not doing well. At my bi-yearly visit, I always ask my neurologist about the latest treatment. Last summer, I remember asking her about Lemtrada, and she immediately shook her head saying, "No, no, no, no!" Some of the medical issues you've encountered are ones she raised. She felt Lemtrada should absolutely be the drug of last resort, and then only with both eyes wide open to all the possible risks. I am content with Tysabri, and will celebrate my 81st infusion in two weeks. I sincerely hope you are feeling better soon.

    Comment


      #3
      regigirl

      No experience with DMD's here, but just wanted to say that I'm sorry to learn that you have been so sick.

      Sending healing thoughts your way. Hope you start getting better very soon.

      Wishing you the best.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Looks by your timeline your sickness started before your first dose of LEMTRADA?

        It's good to see posts like yours so people can read about what others are going thru.
        My neurologist thought this was my best option based on my condition and also after being on other DMD's, so my first dose was July 2015 and second July 2016.

        Either way - so sorry to hear of your struggles.

        Comment


          #5
          I used the term a year and half just rounding the time off but I was doing pretty well until Lemtrada, it was after the Lemtrada that I have become so sick. I'm sorry for that mix up.

          I know it has been a good option for some but if you are thinking about Lemtrada I would be very hesitant to do it.

          And thank you so much for your kind words and good wishes for my recovery.

          Comment


            #6
            This is exactly the type of things I worry about with my son Chris. He starts Lemtrada next week and I am scared to death it will effect him like it did you.

            Tysabri was a Godsend and he did great on it, but his JVC count got too high and he had to get off. He went on Tecfidera and that didn't work at all, so this is the last option I guess.

            Prayers for you that you get better soon!!!
            Dedra
            Son with MS

            Comment


              #7
              HOw old is your son? I would think very long and hard about this decision. I am living a nightmare and I don't want anyone to go through what I am going through.

              But at the same time there are people who are having wonderful results. I can only go by my experience and to be honest, with organ afte organ being affected, I do not think I will live through this. I think my organs are shutting down one at a time. I was not that severe of an MS patient when I took Lemtrada, now I am 40%-50% bedridden and sick.

              Good luck in your decision.

              Comment


                #8
                Hi Guys D-HOLLAND making a decision to start lemtrada is a big decision to make for yourself and must be very difficult to make on behalf of another, how old is your son good luck and you will make the right decision.
                Regigirl you have scared the "whatnots" out of me I hope you recover and end up back to your old self again Craig

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                  #9
                  Sorry, guess it sounded like my son was a teenager or younger, he is 33, was diagnosed at 23 so this is really not my decision, but I have told him my concerns!!

                  Monday he starts and I will be there praying the whole time and for the next 4 years that he made the right choice!!
                  Dedra
                  Son with MS

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                    #10
                    regigirl, I am so sorry and send you my good wishes !

                    Dedra, sending good thoughts and wishes to Chris.
                    Linda

                    Comment


                      #11
                      Also the other thing that I should report to my fellow MSers is that as sick as I have been with the fungal infection, the pulmonary effusion, and the enlarged thyroid is that none of these things were detected by the blood and urine test that we have to have done monthly. None of them.

                      The urine test once prompted me that I had a UTI, but that is it. I think these test are only providing us with a false sense of security as these test were one of the deciding factors why I took Lemtrada. I was told that any of these side effects would be caught and nipped in the bud before they became and issue, this is so wrong.

                      Even after 7 months of battling all these horrible things I still do my monthly labs with Lemtrada and not once have I been notified by them or my Doctor that anything is wrong. Except one time a nurse from my doctors office called and said that my inflammation markers were a little high. I asked her what did that mean and what am I suppose to do and she said she wasn't sure, she would call me back if I needed to do anything, I never heard back from her or anyone from my Doctor's office.

                      I can't find anything but good and marvelous reviews about lemtrada on line, I know I am not the only one who is going through these horrible side effects because every doctor I have been to so far has had at least one patient experiencing one of these symptoms. I just happen to be lucky enough to all of them.

                      Just another thing to think about before you make a decision. And again, all I read is how wonderful this drug is and how it has changed peoples lives for the better. I wish I could report that but unfortunately I can't.

                      Comment


                        #12
                        regigirl - re:
                        Also the other thing that I should report to my fellow MSers is that as sick as I have been with the fungal infection, the pulmonary effusion, and the enlarged thyroid is that none of these things were detected by the blood and urine test that we have to have done monthly. None of them.

                        If I may ask: if not by the monthly labs - how were these detected? My monthly labs have all been ok too.

                        Comment


                          #13
                          I became so sick, my lungs became so bad I could not breathe. I had to seek medical attention due to the symptoms I was experiencing.

                          Comment


                            #14
                            Thanks for the update - and so sorry to hear about your struggles.

                            Comment


                              #15
                              I agree

                              Originally posted by pb909 View Post
                              Thanks for the update - and so sorry to hear about your struggles.
                              I think the same and told the One to One Nurse that all you hear is good stuff I joined a group on FB and all the stories are not great, I was using a trekking stick to walk now I am using a rollator full time. They need to let people know that there are good and bad with this drug. Hope you feel better really soon

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