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Lemtrada - My Experience July 13-17 2015

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    Lemtrada - My Experience July 13-17 2015

    Lemtrada - My Experience July 13-17

    Each morning before treatment:
    - Zantac 150mg (Generic=Ranitidine)
    - Zyrtec 10mg (Generic=Cetirizine)
    - Prescription Valtrex/Acyclovir 150mg (will take until Dr. advises to stop)
    - Tylenol

    Day 1 thru Day 5 via IV - all followed this:
    - Hours 1 and 2: Benadryl and Solumedrol
    - Hours 3 and 6: Lemtrada
    - Hours 7 and 8: Observe

    My notes by day:
    - day 1: slight headache, was weak, and couldn't sleep well most likely due to the Solumedrol.
    - day 2: stronger and again not real sleepy.
    - day 3: about the same and slept much better.
    - day 4: Solumedrol reduced to half dose, really sleepy in the evening.
    - day 5: Solumedrol again at half dose, slept well.

    Hit with a really bad Solumedrol rebound on Saturday, was soooooooooooooooo weak (fell twice). Was a little better on Sunday and a little better today.

    Now the waiting to see the improvements to come!!

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

    Note: I was on Aubagio 14mg January 2013 til now, after 39 Tysabri infusions.
    I'm progressive/relapsing and use a walker for really short distances inside the house and mostly a wheelchair.

    #2
    Keep us posted. I'm curious to know how your doing.

    Comment


      #3
      Post-Lemtrada Update

      I'm a week past my last infusion day and finally feeling "normal" and back to where I was before I started. Everyday was slightly improved as the week progressed. Last Saturday and Sunday were the worst and I was warned the rebound would probably hit.

      Next up my 1 month follow-up with my Dr.

      Comment


        #4
        Thank you for sharing
        I hope you do very well
        Linda

        Comment


          #5
          Thank you for sharing! It helps to know what to expect. Our plan is for me to get the treatment in Jan or Feb. I have been on Tysabri 7 years and am now JC positive and experiencing cognitive decline. I hope you are continuing to do well!!

          Comment


            #6
            1 Month Update

            Had my 1 month follow-up last week with my Dr. It was pretty uneventful since no change yet and no issues/side effects encountered. I will see him again in 3 months.

            Now have my monthly lab work setup at home which is offered by Genzyme - just had my first one today. They draw the blood and take it along with the urine sample to the lab all with no cost to me. Results are sent to my Dr.

            Comment


              #7
              no change is good

              hopefully the progression has stopped, improvements are icing on that cake.
              Diagnosed 9/2010, copaxone 10/10, avonex 10/12

              Comment


                #8
                Wishing you continue to see positive things. Any positives with this MonSter is 'gravy'. Praying for you. Good luck

                Comment


                  #9
                  Dying for another update...

                  I too am progressive/relapsing & will have my infusion 10.5-9. Just curious how you're doing now 2mos out?!

                  Thanks so much for sharing!!

                  Jennifer

                  Originally posted by pb909 View Post
                  Had my 1 month follow-up last week with my Dr. It was pretty uneventful since no change yet and no issues/side effects encountered. I will see him again in 3 months.

                  Now have my monthly lab work setup at home which is offered by Genzyme - just had my first one today. They draw the blood and take it along with the urine sample to the lab all with no cost to me. Results are sent to my Dr.
                  ~jennifer
                  1st symptom '94 Diagnosed 1999
                  Progressive/Relapsing
                  Copax/Rebif/Chemo/Tysabri/Rituxan
                  Plasmapheresis/Steroids/Copax again/Tecfidera/Aubagio/Lemtrada start 10.5

                  Comment


                    #10
                    Originally posted by jllandryusa View Post
                    I too am progressive/relapsing & will have my infusion 10.5-9. Just curious how you're doing now 2mos out?!

                    Thanks so much for sharing!!

                    Jennifer
                    So far no issues - I'm not getting worse which at this point is good. My month 1 lab work was ok, they will collect month 2 later this week. My next Dr. appt will be at about the 4-month mark late-Nov or Dec.

                    Best wishes as you go thru your infusions.

                    Comment


                      #11
                      4 Month Update

                      I had my 4 month follow-up with my Neuro.

                      - I reported I have not felt any changes which is good since stopping my disability progression is a goal.
                      - He went thru his battery of tests with me which he always does and noted no worsening since my last visit 3 months ago.
                      - He wants me to stay on Valtrex for now.
                      - My monthly labs are good. They call if anything abnormal and they haven't called me, but I like to ask just in case.
                      - He thinks we will do the 3 treatments at the one year mark then that will be it.

                      He wants to see me in 2 months which will be the 6 month mark since my July treatment week.

                      Comment


                        #12
                        6 Month Update

                        I had my 6 month follow-up with my Neuro.

                        - I reported I have not felt any changes or worsening.
                        - He went thru his battery of tests with me and noted he sees no worsening since my last visit in Nov (4 month appt).
                        - My monthly labs are still good.
                        - At my Nov appt he suggested probably doing the 3 treatments at the one year mark, but now if I remain stable he is thinking I'll do an MRI and if no changes since my last one we won't do the 2nd dose.

                        He wants to see me in June to check my condition and if still stable schedule the MRI. This will be just short of 1 year from my July 2015 treatment week. He also mentioned his 11 patients that had the first dose all are stable so far.

                        It's been a long road of continued slow disability so stable is good!

                        Plasmapheresis - 3 months
                        Tysabri - 3 years (39 treatments)
                        Aubagio - 2.5 years
                        Lemtrada 1st dose July 2015

                        Ampyra since 2009

                        Comment


                          #13
                          Anyone here tried Lemtrada?

                          I'm supposed to start the Lemtrada infusions in March. Anyone here that can share their Lemtrada journey?
                          You don't stop laughing because you grow old....you grow old because you stop laughing!

                          Comment


                            #14
                            My journey is above with periodic updates. Also, others have posted their experiences in this Lemtrada message board.

                            Let me know if you have specific questions.
                            Best wishes to you.

                            Comment


                              #15
                              UPDATE

                              I had my checkup with my neuro this week - and based on some slight weakness these last 1-2 months he is recommending I take the second treatment of 3 doses over 3 consecutive days. I had gone without any additional weakness/disability progression until lately. We will not be doing an MRI.

                              No side effects and no issues with my monthly labs.

                              I'm tentatively scheduled for mid July which will be exactly 1 year from my first treatment. Approval process / required paperwork is in-progress.

                              Comment

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