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Begin Lemtrada infusions on Monday 1-23

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    Begin Lemtrada infusions on Monday 1-23

    Well, I have been 100% approved to receive Lemtrada infusions on Monday, January 23rd. There have been many pre-Lemtrada tests and I have had to plan 'boxed' meals and snacks and plenty of water to take with me to the infusion site. I wonder what 'surprises' this new 'adventure' will hand me ?
    Wish me luck!

    #2
    I don't remember any surprises...I had already been thru the infusion process with Tysabri, and Lemtrada is a much longer day but once you make it thru the 5-day treatment you are done.

    I was warned about the steriod rebound which hit me hard starting on day 6 for about a week. My year-2 treatment they had lowered the 3-day dosage which helped.

    Best wishes to you and keep us posted on your adventure like many of us have documented.

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      #3
      Originally posted by JerryD View Post
      Well, I have been 100% approved to receive Lemtrada infusions on Monday, January 23rd. There have been many pre-Lemtrada tests and I have had to plan 'boxed' meals and snacks and plenty of water to take with me to the infusion site. I wonder what 'surprises' this new 'adventure' will hand me ?
      Wish me luck!
      Hi Jerry

      Wishing you all 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. ~

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        #4
        Good luck,Jerry We will be following you and hope all goes well!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #5
          All the best Jerry.

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            #6
            Thank you, folks ! I very much appreciate your encouragement ! I'll post as my adventure progresses.

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              #7
              Wishing you the best tomorrow. You have waited a long time for something to help I hope this is the one.
              God Bless Us All

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                #8
                Good luck Jerry hope you have a smooth week talk to your Dr and tell them if you feel anything unusual, when I had mine 3 months ago during the infusion I got the shakes real bad the bed was moving around but with some meds this settled down but I also lost the use of my entire Right hand side for about 10 to 12 hours this also settled down just took a little longer, but my neurologist explained I could expect a return of my symptoms during my infusion and he talked me through the experience so I just let things progress all good in the end, no 3 months on I feel ok good luck take a good book and some sweets to suck on Craig

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                  #9
                  Best of luck!

                  Good luck Craig! I hope it all goes well for you. I start mine the very next week. Keep us posted if/when you're feeling up to it.
                  DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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                    #10
                    Good luck today, Jerry

                    Wishing you the best with your infusions, and hope they are both uneventful and prove helpful. Please keep us updated, and Good luck!

                    (You are braver than me, and so hope this treatmet proves worthwhile for you! )
                    Kimba

                    “When you change the way you look at things, the things you look at change.” ― Max Planck

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                      #11
                      Well, I am about 3 hours into my first day ( day 1 of 5) of Lemtrada infusions. I am sitting in the comfy chair with an open bottle of water ( the goal is 1 bottle every hour ) and the drug suspended on a pole at my side. All is going relatively well. I think that I have traveled to the toilet about 7 times over the past 3 1/2 hours. I am feeling the 'urge' all of the time and it is annoying ! Thank you for the encouragement !

                      Comment


                        #12
                        Originally posted by JerryD View Post
                        Well, I am about 3 hours into my first day ( day 1 of 5) of Lemtrada infusions. I am sitting in the comfy chair with an open bottle of water ( the goal is 1 bottle every hour ) and the drug suspended on a pole at my side. All is going relatively well. I think that I have traveled to the toilet about 7 times over the past 3 1/2 hours. I am feeling the 'urge' all of the time and it is annoying ! Thank you for the encouragement !
                        Hi Jerry

                        So glad to know that all is going well!

                        Jerry, if I drank 1 bottle of water every hour, I would have to just stay in the bathroom the entire time!

                        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


                          #13
                          Just thought i'd check n see how you're doing Jerry.
                          Thanks for keeping us posted.

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                            #14
                            The first day was the hardest for me physically bc I guess all those blasted cells - that's so good that you're drinking all that water and flushing it all out. After today I think the next four days will be much easier.

                            Wishing you the best!

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                              #15
                              Day 3 of the infusions and all is as well as can be. I did experience some 'flushing' as I was being 'pre-medicated' with solumedrol 1000mgs. But as it has been 3 days of 1000mgs IVSM , and tomorrow will be 500mgs, I think the 'flushing' is just 'comes with the territory'. No issues with this therapy. I sure hope it halts the 'MonSter' and helps me get back on my feet ! My butt is beginning to get sore. lol

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