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Lemtrada - My Experience July 13-17 2015

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    #16
    Thanks so much for sharing

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      #17
      Lemtrada - Countdown to year 2 treatment July 13-15 2016

      All approvals are complete and I will have the second treatment doses 1, 2 and 3 July 13-15.

      Pre-treatment actions completed but not limited to:
      - baseline lab tests
      - insurance reviews
      - neuro appt and other discussions with his office since the infusion center is there
      - multiple calls with my MS on-to-one nurse re: prep and copay approval

      I will post a year 2 update once my 3 dose treatment is complete. Not many year 2 experiences posted so I hope this helps others.

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        #18
        LEMTRADA 2nd Year Treatment - My Experience July 13-15 2016

        LEMTRADA 2nd Year Treatment - My Experience July 13-15 2016

        Here we go into year 2 - I made it and I'm back!

        Each morning before treatment - the same as treatment 1:
        - Zantac 150mg (Generic=Ranitidine) started 3 days before & continue for 3 weeks
        - Zyrtec 10mg (Generic=Cetirizine) started 3 days before & continue for 3 weeks
        - Prescription Valtrex/Acyclovir 150mg (will take until Dr. advises me to stop)
        - Tylenol at start of each day then as needed

        Day 1 thru Day 3 via IV all followed this:
        - Hour 1: Benadryl and Solumedrol (day 1 500 mg, day 2 250 mg, day 3 125 mg)
        - Hours 2 and 5: Lemtrada
        - Hours 6 and 7: Saline and Observe

        My treatment notes by day:
        - day 1: slight headache, was weak, and slept well overnight.
        - day 2: stronger but not real sleepy.
        - day 3: about the same and slept much better.

        1st week at home after treatment:
        -- day 1 not too bad but weaker into evening
        -- day 2 still alittle weak
        -- day 3 still alittle weak
        -- day 4 better
        -- day 5 close to pre-lemtrada strength

        Not hit with Solumedrol rebound as bad this year, last year was really bad. Think it was due to the reduced amount administered this year (last year by day - it was: 1000 mg, 1000 mg, 1000 mg, 500 mg, 500 mg)

        I will have a follow-up Dr. appointment in 1 month.

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          #19
          Thank you!

          This is awesome! Thank you for sharing! In the process of deciding on this and I'm pretty sure I'm going for it. You're updates are such a help. Means a lot to know what exactly to expect. Actually looking forward to getting this started and over with! Can't wait for the next update! Thank you again!

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            #20
            That's good to know about a steroids. They messed me up last year too. I'm so glad you're done with year 2!

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              #21
              I had my 2 month follow-up with my Neuro since my 2nd Year Treatment.

              - I reported I am still weak since about the time of my treatment, actually a little weaker. He said as time passes there could be an improvement back to where I was back in April. Stopping my disability progression is a goal.

              - He went thru his battery of tests with me and can tell the weakness is there.

              - My monthly labs are still good. They call if anything abnormal and they haven't called me, but I like to ask just in case.

              - He wants me to stay on Valtrex/Acyclovir for now, also I'm still on Ampyra.

              - I will see him in 3 months which will be about the 6 month mark since my July treatment week.

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                #22
                I had my 6 month follow-up with my Neuro since my 2nd Year Treatment.
                No real change so this is pretty boring!

                - I reported I am still weak similar to the time of my treatment.
                - He went thru his battery of tests with me and can tell the weakness is the same.
                - My monthly labs are still good.
                - He wants me to stay on Valtrex/Acyclovir for now, I'm still on Ampyra.
                - Still no side effects or any other issues.
                - I will see him in June which will be about the one-year mark since my July 2016 treatment week.

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                  #23
                  Thanks!

                  Thank you for sharing. It helps to read your posts so I know what to expect with my upcoming treatment. Glad you're doing well!
                  DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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                    #24
                    I had my 1 year follow-up 6/29 with my Neuro since my 2nd Year Treatment.
                    - He went thru his battery of tests with me and can tell the weakness is about the same.
                    - My monthly labs are still good.
                    - He said I can stop Valtrex/Acyclovir since my lab levels are up.
                    - I asked about my Ampyra due to no medicare cost copay when I switch to it soon - he said to finish out current supply and then self-monitor and if I have issues then to 4-AP.
                    - Still no side effects or any other issues.
                    - He recommended no year 3 treatment for me at this point.
                    - I will see him next in December.

                    My treatments:
                    July 2015 year1 5 dose treatment
                    July 2016 year2 3 dose treatment

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                      #25
                      Pb909

                      I have been using 4AP since I went on Medicare. I actually like it better than Ampyra. 120 pills for $47.00 including shipping from Skips Pharmacy. I usually take 3 pills a day.

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                        #26
                        Thank you for taking us along on your journey!
                        My best wishes to you and I hope you get stronger and stonger
                        Linda
                        Linda

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                          #27
                          pb909,
                          Thank you for your posts. I have read many of your posts about your experience with Lemtrada. I had my first round of Lemtrada at the end of January 2017. My next infusions will be at the end of January 2018. I will post about them. Your posts have given me the confidence to go through the infusion treatments. I can't thank you enough. Good luck

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