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Neuro thinks I need to try Lemtrada

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    Neuro thinks I need to try Lemtrada

    I have been going through some tough days, lately. I have called my neurologists office a few times these past 3 weeks and I went in to see him one day, not a regular scheduled appointment. He has discussed Lemtrada with me.
    The upshot is that I will be going through the requirements to begin the Lemtrada treatment regimen, soon. At this point, I am willing to try any treatment that I can get. Just sayin' !

    Here's an update on the Lemtrada study for you, Jerry. It sounds promising. I truly hope it works for you.


      My Neuro thought Lemtrada was the best path for me after its approval. I was previously on Tysabri and then Aubagio. A bunch of us have posted our experiences on this board.

      Best wishes on whatever path is in your future.


        Thanks for your responses.
        I think that I will go for it if my doctor can make it happen. I am dx'd with PPMS. There isn't anything available for that form . I assume my neurologist will use it 'off label'. I am a little afraid of the nasty side effects but I know it has been used for another disease in the past. I trust that my neurologist is confident in prescribing it. What other choices are available?


          Hi jerryD, trying to decide what corse of treatment to go down can be scary often more so then the drug itself, if you as myself have a great deal of faith in your Neuro sometimes you have to let them decide and stop worrying about what may happen, I and many others like yourself felt that something has to be done we just can't go on like this so do I start lemtrada or think if only I had.

          My Neurologist and I talked a fair bit about what can/might happen, and just before my first infusion sat with me for an hour or so re assuring me about, your old symptoms might come back in a rush but we can deal with this,

          a rash but we can deal with this, we will deal with whatever arises, sure enough old symptoms, my entire left side failed, paraplegia, but with the steroids it sorted itself out within hours,

          I had the shakes bad, this is good my neurologist says it shows your immune system fighting the drug and your body working, they fixed this, thank god painful thighs from shaking,
          the dreaded rash but not too bad and the drugs fixed this in under 1/2 hour

          I often felt sick, nausea, but they fixed this, and now I have to waite and see what happens next.

          I know you will make the decision that is right for you, talk to your Dr's and read as much as you can, the problem with a lot of forums is people in general, when we are going/feeling good we don't post but when we feel lousy we post, so often more negative than positive posts even though this may not be a true representative of what is happening. good luck Craig


            I'm not sure I would do Lemtrada for PPMS, but not sure that I wouldn't either.

            My first inclination would be to push for early access for ocrelizumab. If approved you will get a minimum of 2 doses before it's available to the general public. The safety profile of Ocrelizumab/Rituximab is considerably better than Lemtrada. Ocrelizumab will also be be indicated for PPMS with consistent trial data of PPMS benefits. The recovery period for Ocrelizumab is also virtually nil, especially compared with Lemtrada. You also won't have 60 consecutive months of blood monitoring. While Ocrelizumab treatments are into perpetuity they are only twice per year after your initial double dose.

            Let me change my mind. If I was PPMS there is no way I would try Lemtrada unless I first failed on Ocrelizumab.



              Thanks Marco. I appreciate your response.
              I am filling out the Lemtrada forms, now. I trust that my neurologist has a good measure of confidence in Lemtrada. He has been using it for some time. I have confidence in his judgement . Since my condition has been deteriorating this year, I feel that I must try something to stop this madness.
              Good luck to you... and me !


                I am also PPMS with relapses and chose Lemtrada due mainly to my neuro's recommendation and that Ocrelizumab was not available. I was not willing to wait with hopes to slow down my disability progression ASAP.

                My first Lemtrada treatment was July 2015 and second July 2016, I'm glad I went this route instead of waiting. Yes I now have 4 years of monthly blood and urine testing but the mfg offers a service that comes to my home at no charge to me (luckily I have no fear of needles!).

                We each need to make the best decision based on the facts available and I wish all well in your research and decision.


                  I have decided to go the Lemtrada route. The first thing that must be done is go for some blood tests. I went to Quest diagnostics because the neurologists office people told me that Genzyme would be picking up the costs. The tech at Quest knew nothing about the Genzyme billing situation and told me that I would be billed for the labs if I decided to get them done. I declined to do that and my neurologists office is closed. I will wait until next week to figure out this newest puzzle. Just more to deal with. Good luck, all.


                    Good for you on making this decision.

                    A couple of notes from my experience:

                    - Do you have a Genzyme Lemtrada MS 1-to-1 nurse assigned? They helped coordinate a lot of this for me including covering those lab fees as well as the after-treatment monthly labs I choose to have done mobile at my house.

                    - My neurologists office had a dedicated person assigned to me and were very helpful working thru everything for me.

                    - I use Quest labs as well and never had an issue nor was responsible for any fees.

                    - There was basically no cost to me for the drug nor infusion fees - Genzyme payed $100 per day to my neurologists office to help cover my costs (this was both my 5-day year1 treatment and 3-day year2 treatment).

                    - I'm sure a lot of this coverage was based on what my insurance covered, but I think the drug and labs were outside this.

                    Best wishes as you move forward!


                      So pleased you have an option now. It might not be ideal, but at least you have the ability to choose to try it.

                      As for the lab tech telling you that you would bear the cost of testing: nope nope nope nope nope nope. Lab tech is uninformed/uneducated and frankly, a dope. His answer should have been "I'm not sure how Genzyme bills because I've never done that, but I will look into it and let you know what I find out." A mute point really, because Genzyme's one-to-one nurses will set you up with whatever option you choose: a traveling lab service or an established brick and mortar lab.

                      I've done both options. When the traveling lab service fell short of my expectations, I switched to a storefront lab that cannot deal with me by remote. The come to you option is great, as long as they don't stand you up or forget who you are and either a, call you multiple times or b, forget you exist, to where you have to run herd on THEM, lol. Bad idea for this memory impaired chick, I can tell you. Plus, when you forget me, I get a little testy. I happen to think I'm unforgettable. Or should be.

                      Good luck with your decision. I hope you keep us posted on how it goes for you. Every little detail, please. We're all ears!


                        I'm in the pre-screening process, now. It would be nice if the doctor would let me know that there is a urine test as well as blood draws. I had to come back home after I had the blood draws at the Quest lab then I sent the urine jar into the lab. I also have a bunch of scripts from my neurologist to complete. There is a dermatology consult and several more blood labs to run. I appreciate that there is this attention to detail but I would appreciate a 'heads up' for this stuff . Either way, I am going to go through with this treatment ! Thank you all for your responses !


                          Good luck to you Jerry.
                          God Bless Us All


                            all my best wishes for a successful experience and outcome


                              All The best Jerry.
                              Thanks for sharing.
                              Will keep an eye out to see how you are going.