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LEMTRADA IS NOT GOING WELL FOR ME

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    #16
    Normand44, I hate so bad you are going through this but it is validating for me to know that out of everyone in the world that has taken lemtrada that I felt that I was the only one in the whole world that was having serious health issues from lemtrada instead of having these amazing miraculous recovery story.

    My latest update is that I am getting better but far from where I was when I was on Tysabri. This has been a nightmare for me and it's not over. They are going to flush my knee in about 4-6 weeks to see if they can get more of the fungal infection out.

    Vanderbilt says I have infection in my body but they just don't know where. I have not heard a word from Lemtrada, I got copies of my monthly blood tests which clearly show there are problems.

    For those that are having remarkable improvement I am so happy for you and I must say that there is some improvement in some of my MS symptoms, my eyes have improved and I don't seem to have the random pain that I used to have but however all these other health issues are not worth those little improvements. I have been in life threatening conditions 2 times, I am not ready to die, I am fighting with every bit of strength I have.

    Thank you so much for sharing this info with me. I hope things turn around for you, you are in my prayers.

    Comment


      #17
      Hello - I'm also really sorry to hear about your medical troubles. And to feel so isolated that's the worst! It literally brings tears to my eyes. I understand that isolation and lack of validation, not regarding the lemtrada but other contexts. And you seem to be in that population of "rare but serious side-effects" and I so hope your troubles end soon.

      Been thinking of you a lot today. You helped us all by sharing your experiences. I see my neurologist soon and I'm going to discuss the issue of fungal infections and if there is a test they can add to the monthly monitoring even if genzyme doesn't include it I'd gladly pay out of pocket bc you're right - they don't include it in the tests. Others may take note too and we are all indebted to you for that.

      I've also been thinking that after you conquer your medical problems, and you will!, I'm hoping that the big picture may begin to appear. I understand you may not continue but even if not - I'm hoping some of the benefits might begin to show. But it's something to think about later.

      I'm wishing the best recovery and I know I'm not alone in having you in my thoughts and waiting along with you that you feel better soon.

      Best wishes,
      Soraya

      Comment


        #18
        Soraya thank you so much for your kind words I appreciate it so much. It's very hard to test for a fungal infection it takes it a long to grow, it's not a bacteria infection but I would definitely talk with your doctor and think very carefully about this decision.

        It's only a decision you can make for yourself. If your disability and quality of life is very poor then you may to really consider it. However if your disability and quality of life is not as severe I think I would just wait around and see what happens with this drug after it has been our for while.

        But if you are on Tysabri and your JCV numbers are high, like mine were, then that also adds to the considerations that you must think about.

        Best of luck to you and again thank you for your kind thoughts.

        Comment


          #19
          Hi Regigirl you feeling any better? As you said before deciding to go on any DMD is a one on one choice with family involved, and we all hope what we choose is the correct decision,

          A lot of things go through your mind when making a huge decision, we think about how it will effect us, our family and our quality of life, how we will feel after we start and how long before we are back to better than "normal" because for me I don't just want to slow down MS I want to be better then I was 20 years ago (I live in hope).

          I hope it won't be too long before you get the infection sorted and get your lungs breathing properly again keep your chin up, I know its hard when it feels like someone keeps planting their foot on your back we are thinking of you good luck Craig

          Comment


            #20
            Lemtrada....the sweet and the bitter

            Originally posted by regigirl View Post
            Normand44, I hate so bad you are going through this but it is validating for me to know that out of everyone in the world that has taken lemtrada that I felt that I was the only one in the whole world that was having serious health issues from lemtrada instead of having these amazing miraculous recovery story.

            My latest update is that I am getting better but far from where I was when I was on Tysabri. This has been a nightmare for me and it's not over. They are going to flush my knee in about 4-6 weeks to see if they can get more of the fungal infection out.

            Vanderbilt says I have infection in my body but they just don't know where. I have not heard a word from Lemtrada, I got copies of my monthly blood tests which clearly show there are problems.

            For those that are having remarkable improvement I am so happy for you and I must say that there is some improvement in some of my MS symptoms, my eyes have improved and I don't seem to have the random pain that I used to have but however all these other health issues are not worth those little improvements. I have been in life threatening conditions 2 times, I am not ready to die, I am fighting with every bit of strength I have.

            Thank you so much for sharing this info with me. I hope things turn around for you, you are in my prayers.
            Regigirl, I too was saddened to read of your troubles following Lemtrada. You provide important wisdom about the choice to take Lem...yes, it can be sweet, very sweet, and it can be bitter, very bitter. Unfortunately, there are just no guarantees as even though we all have MS, we don't have the same immune systems which means our MS is still so individual.
            I am glad you shared your story b/c the clinical community doesn't know all it needs to know about Lem and its effects on a larger pool of patients (outside the studies as well as past off label use of Campath among a small group over the years).

            Please don't give up. I am sending you positive thoughts and prayers wherever you are for rest, healing and peace.

            Take care,
            Wellnesschic

            Comment


              #21
              Hi regigirl what's going on you feeling better? I hope so Craig

              Comment


                #22
                Regigirl,

                I have been disappointed reading of your struggles with symptoms post-Lemtrada. I sincerely wish you weren't dealing with all that and I hope you're feeling better. An update on your knee and other troubles would be welcome, negative or not. Sending you good vibes and well wishes!

                Comment


                  #23
                  Not much better

                  Hello everyone, I just thought I would update my condition. It has been a year ago that I was at Vanderbilt fighting for my life. I have not written or read anymore on this website because I felt like I was being discredited on another Lemtrada thread. I have enough fighting to do in my life without being discredited by this support group, even though they did not use my name they made it very clear who they were talking about.

                  A year later, I have been so so sick. I still have the fungal infection, I had to have another surgery on my knee this past March and was in Vanderbilt for over a week. The fungal infection got worse and now I have a quarter size hole in my bone, the Doctor was so shocked, it didn't show up in the MRI or X-ray, but it's because it was so full of infection it wasn't picked up on any scan. It was a much worse surgery then the Doctor thought it would be. They said I may be fighting this fungal infection for the rest of my life. I feel so bad all the time.

                  All my Doctors at Vandy are amazed that I am doing as well as I am and that I am still walking and not in a wheelchair. I am better then I was last year but I am much worse then I was before the Lemtrada. This has been a nightmare and we still do not know if I will ever recover from this. I am now at a doctors appointment about 3-4 times a month. It is a 2 and a half hour trip for me to Vandy, so it's not cheap.

                  I still have not received any indications that anything is wrong with me via our monthly blood tests and urinalysis. It was only when I could not breath and there were no doctors in my area that seemed to know what was going on and I'm afraid My Neuro who I love so much just kinda of left me to my own means to figure out what to do. Finally when I got so bad and my family thought I might not make it because I could not breath, they took me to Vanderbilt to the ER and they admitted me into the hospital and kept me for about a week and half and found out that I had a fungal infection in my knee and my lungs, it was very very serious and very very painful, I have never experienced so much pain before and I had my three children natural childbirth and I have had kidney stones, this pain was much worse then either of those.

                  I understand that I seem to be the only one in the world who has had a bad experience with Lemtrada. I will say that I have seen some improvement in a lot of my MS symptoms. I also acknowledge that my experience is not typical, I am one of the exceptions but I know I can not be the only one. It's funny when you google Lemtrada, I have never seen anything negative about it. I think it's also strange that this website that has always been there for me and has been so supportive and kind and has given great advice now tries to discredit me when I speak negatively about Lemtrada. I find this very odd.

                  I do not believe I am the only one in the world who has had a bad experience, but where are these people? I have not found anyone who has a complaint of any kind, I find this very odd.

                  Again I am not telling anyone not to do this therapy because it seems to help so many people but I also have become very suspect and skeptical about their "monthly testing". I was on my death bed and the pharmaceutical company had never ever contacted me that anything was wrong.

                  I'm sorry for being so negative but after 2 years of fighting this I still have not have heard anything from those "monthly test" that there is a problem and Vanderbilt does my blood test every month too and there is always a problem. Always!!

                  I would have never thought anything like this would happen to me and no one does. We see those "side effects" but we always think that is someone else, we think that would never happen to me but it does happen to some people. I would just think this over very long and hard before I did this. If you have the luxury of waiting a while before doing this, I would wait and see how it does over the next few years.

                  This is my story, this is what I have been through with Lemtrada.

                  Comment


                    #24
                    regigirl,
                    I am so sorry for you. I am glad that you have posted about your experiemce with Lemtrada for all to read. A few ideas come to my mind .
                    Did you state that you were tested JCV+? Did you know that the infusion of Lemtrada was going to raise your risk of higher levels of fungi and other things that are normally suppressed by the B cells and T cells in your bloodstream. As I understand it, the 't's and 'b's levels that Lemtrada reduces are part of the immune system that attack infectious stuff that nare foreign to the body. Just a thought. Good luck

                    Comment


                      #25
                      Hi regigirl
                      hope you get better soon you have had a rough run but its good your still walking rather then in a chair, my lemtrada doesn't appear to be working but no SA and I am still hopeful, the blood test every mth as I understand they only report what is outside what your neurologist considers ok so depending what your doctor considers within parameters they say everything is ok regardless of results if that makes any sense, and you shouldn't be discredited you only say what is happening to you, good luck Craig

                      Comment


                        #26
                        Hello Jerry, thank you for your kind words.

                        I was on Tysabri with a pretty high JCV number, yes I was positive for the virus.

                        Yes, I read the side effects of Lemtrada many times and my doctor talked to me about some of these side effects.

                        Yes I knew that it would lower my immune system. I also knew that it would make me susceptible to infections, I knew that was possible. After lemtrada I was so careful about germs, I wore a mask to the grocery store and washed off everything with an antibacterial cloth even though my Nuero said that wasn't necessary.

                        But I guess my story to others is that, I didn't really know what an "internal fungal infection" really was. It was not explained to me how serious this is, not like a bacterial infection, it is very hard to kill especially with a compromised immune system.

                        I was also told that my immune system would be back to normal in about a year. This is not true. The infectious disease doctors at Vandy said that they do not know when, if ever, the immune system will be back. Now this is not just specific to me and my situation, this is for anyone who takes a therapy that wipes out their immune system. They told me that they will treat me like they treat an aid's patient with a fungal infection because my immune system is far from being normal, still after over 2 years and I had only one round of Lemtrada.

                        The other thing that I have a problem with is that when my monthly blood tests showed problems and I developed severe breathing problems there was no help for me, I was left to find doctors and help on my own which was very time consuming and in the meantime it became life threatening and still no outreach from the drug company to help get medical care for these problems that stem from the lemtrada.

                        I researched this as much as I could before I took lemtrada, and these things were not explained to me. I was told my immune system would be back in about a year, if I knew that it would be a years before it ever returned or maybe never, I really doubt that I would have ever had done this but I was told that would just be temporary.

                        Again I am not telling people not to do this, I just hope I am able to give them information that I did not have when I made my decision.

                        Comment


                          #27
                          Thanks for continuing to post your experiences and again best wishes to you.

                          Comment


                            #28
                            Regi,

                            I am so sorry if anyone here made you feel bad, you have every right to say what your experiences are and I personally appreciate that.

                            Chris (my 34yr old son) is having his second round in September and even though he has not had any side effects yet it still scares me half to death!!

                            Take care!!
                            Dedra
                            Son with MS

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