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Full disclosure.. my Lemtrada experiences

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    Full disclosure.. my Lemtrada experiences

    I couldn't rest knowing that I haven't posted some relevant info about my Lemtrada treatment. I don't know about any other MSers but I feel the need to post some of the 'surprises' that I was unaware of prior to getting the 5 day infusion.
    The routine for prepping for the infusion may not be 100% universal for every patient. This is my experience.

    First, I was sent to Quest Labs for blood and urine tests, as Genzyme has a 'deal' worked out with Quest to cover the expenses of the blood labs. Second, once the patient has been accepted into the Lemtrada the program, the patient is required to get a blood and urine test every month for 4 years. Third, it is essential that the patient drink about a gallon of water, before, during and after the infusion of Lemtrada to flush out the 'dead' 'B' and 'T' cells that Lemtrada kills.

    My neurologist ordered that I get a tuberculosis test. That was a test that my PCP's office completed. Fourth, after the infusion, it is recommended that the patient avoid contact with just about anything that could carry germs. The patient should wash hands frequently. Use hand sanitizer, frequently. The patient should avoid hand shakes. Avoid crowded areas like the mall, church, public meetings. The patient should avoid eating food prepared at restaurants or delivery meals.
    Then there are foods to avoid like sushi, deli meats, soft cheeses, smoked salmon, hot dogs, raw sprouts, pates or meat spreads. Also inspect and wash thoroughly all raw vegetables.
    I was expected to begin taking Acyclovir, Zantac and Zyrtec 3 days prior to the infusion.
    The Acyclovir will be continued for about a month.
    That's about all of the small details that I didn't know before the infusion. Good luck to anyone that chooses Lemtrada.

    OCD ALERT: "Fourth, after the infusion, it is recommended that the patient avoid contact with just about anything that could carry germs."

    Yeah but don't do anything stupid like trying to drive from palo alto to monterey during sessions just to clean the carpet with your new mean green carpet cleaner bc you might run into a sign on the highway and rollover a couple times. Also it may not even matter bc you might turn on the hvac with a filter that the landlord hasn't changed in probably forever and consequently contract a strept throat-like sore throat. The pain will drive you to urgent care so no recommendation on my part needed here.

    And don't worry tooo much if you fell and scraped your knees pretty badly right before treatment. Even though the nurses may not say anything eventually a doctor will drop by and see it and show you how to clean and dress it daily for weeks after and be patient bc your platelet count is low and it heals slowly. Same goes for bruises sustained from said hypothetical car crash.

    It might be impossible to stave off infections - just be very observant and go to clinic at first sign of anything. And get a second opinion if you have some nasty cuts bc they have to be treated.

    But if you're renting you might want to contact your landlord to change water/hvac filters.

    I might sound blithe but it's just that like everything else you can take precautions but don't freak out and certainly if you have ocd tendencies try to use some insight and/or listen to others with cooler heads.


      I love it ! Thanks for the response ! It really lifted my spirits. And, I will admit, I haven't been clinically diagnosed but I think that I am OCD. So you hit a nerve, there ! Nerves ! Ha Ha Ha


        Yay, it's nice to hear I lifted someone's spirits too. :-)

        Here's my ocd story of the day: The dishwasher tablet never left the compartment but I only saw it after I put away everything. It's a happy ending but it's not funny yet so can't report anything else. ;-)


          Lemtrada - about 1 month post infusion

          My Lemtrada update for 1 month after infusion.
          I am about 1 month post-infusion and I feel good. I don't know about others that have been treated. I think it's only fair that I post my experiences for other MSers information.
          I have had the first, of 48 monthly, post infusion blood and urine test by the Genzyme traveling nurse. I recommend that all Lemtrada post-infusion MSers use this service provided by the drug manufacturer. It is very convenient . I was planning on doing these tests ( for the next 4 years ) at the local Quest Lab ! This arrangement with the traveling nurse is better for me.
          Good luck to all.


            GREAT NEWS! I am glad to hear you are still doing well after one month post infusion. I hope it continues!


              Thanks HuntOP,
              From your PC to God's ears ! ( To mangle a phrase ) ! Much appreciated !



                Glad to hear it Jerry! I'm a week behind you post treatment so I was 3 weeks this past Friday. I'm still fighting fatigue and some nausea which I've been taking gravol for (non drowsy or I'd be sleeping allllll the time).

                I can say that each day gets a little better and today I feel not too shabby. I did a little more and don't feel as weighed down as before.

                Had nausea, again, so took my lovely Gravol. Once the nausea stops I think I'll be good to go! The fatigue is manageable but nausea is what puts a stop to everything.

                It sure is boring being on a couch or a bed for 4 weeks. Ready to get on with it already!! Lol!
                DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019


                  Hi Guys its been 4 months since lemtrada for me and Im still waiting for the miracle I feel very tied fatigued all the time but it is summer here days are in the mid 30C deg I have had low platelet count but ok now and I don't feel any worse then pre lemtrada Craig


                    Craig, really sorry that you and Starla have not felt the 'euphoria' that I felt the first few weeks post-infusion ! I am praying that all of us (Lemtrada patients) experience nothing but smoothe sailing from now until forever ! Good luck