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Hi guys well I started my lemtrada

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    Hi guys well I started my lemtrada

    On monday morning I started my lemtrada will a positive attitude, first I had (phenergan) then the solumedrol then the lemtrada all went fantastic until about 3 hours into the lemtrada.

    I got a bit of a temp and started shanking badly they stoppednthe lemtrada while they treated this withing something I just cant rember but all settled within a short period

    Torwards the end of the first day of treatment I lost the use of my right leg and right arm had to spend the night in hospital but by 11pm all had gone nack to normal, I wans too concerned with what happened as my neirologist explained what could be expectet before and I started so I kust went along for the ride, first day over

    Wnd day all god a little sick in my stomache but no other problems all.good for that day.

    3rd day all good again a little sick still and that night a small rash bu it went with a dose of phenergan so good day.

    4th day all going great no problems except a little sick. Craig

    #2
    Hi Craig

    Sorry to hear about your ruff start to Lemtrada. I hope it keeps getting better for you and makes a positive change in your ms.

    Im waiting for my wbc to go back up, also waiting to hear whether it'll be covered and if the Aubagio is out of my system before I can start Lemtrada. Thanks for sharing your experiences so far. Wishing you well.
    DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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      #3
      Craig,
      Sorry to hear of your struggles, and hope it continues to improve for you.
      I had a big hit after my 5-day dose finished due to the Solumedrol ending, lasted about a week before I recovered. I was warned by my Dr. and also another patient that had been thru it.
      Best wishes to you.

      Starla,
      I stopped my Aubagio 6 days before my first Lemtrada dose.

      Hopefully this thread gets moved to the Lemtrada board.

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        #4
        Oh wow. I bet that was scary to say the least. I'm glad you are feeling much better than the first day.

        Is the feeling a little sick part supposed to loom around do you know or is that expected to balance out over time?

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          #5
          Originally posted by jamilea View Post
          Oh wow. I bet that was scary to say the least. I'm glad you are feeling much better than the first day.

          Is the feeling a little sick part supposed to loom around do you know or is that expected to balance out over time?
          Thanks guys for your thoughts

          Yes feeling sick can be a part of the symptoms but not too bad Dr said it shouldnt last long after I finish my 5 days, I was feeling sick again last night but other than that all very good and positive, Im feeling way better than I thought I would be.

          On my last day (5) will post tonight depending on how I feel, sorry about all the spelling mistakes in first post im using my phone not laptop catch you all later Craig

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            #6
            Ok all done now just to see what happens.
            Started off the day a little sick had some paracetamol so I didn't get the temp and shakes, had some phenergan for the rash, soulmedrol and then the lemtrada all good until the end of the day when I got a horrible rash another dose of phenergan and that went within 40 minutes everything has settled down and I feel good now the waiting process and see what is to be as I said before I feel much better then I expected to good luck guys I will keep posted if any changes good or bad Craig

            Comment


              #7
              Wishing you well. Hope things continue to get better. Will look for the updates.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Happy to read that your infusions are progressing and you are tolerating the treatment . I attended a Lemtrada educational event/dinner, 2 days ago. It sure looks like a winner ! Just fight to get through the week, and you are more than 1/2 way through. In a year, I hope to read of the success of this treatment for you ! Good luck

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                  #9
                  Ok guys its been a week since my infusion and all good still weak down my right side worse since lemtrada and now I smell smoke all the time whats worse we lost everything to a house fire 5 years ago so I'm super paranoid when I wake at 1am keep safe and positive Craig

                  Comment


                    #10
                    Hi Guys well its now just over 2 weeks since I completed stage 1 of my lemtrada and Im feeling a lot better still a lot of aches and pains and trouble walking (still using a cane or walker) and still weak down my Right side but overall feeling better, today and yesterday spent a few hours in the garden weeding and planting enjoying the sun and fresh air, collected the eggs with my grand daughter, and sleeping less through the day so far life is improving, I hope it keeps getting better Craig

                    Comment


                      #11
                      Good to hear and hoping it continues to get better for you.

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                        #12
                        Originally posted by dastardly View Post
                        Hi Guys well its now just over 2 weeks since I completed stage 1 of my lemtrada and Im feeling a lot better still a lot of aches and pains and trouble walking (still using a cane or walker) and still weak down my Right side but overall feeling better, today and yesterday spent a few hours in the garden weeding and planting enjoying the sun and fresh air, collected the eggs with my grand daughter, and sleeping less through the day so far life is improving, I hope it keeps getting better Craig
                        This is such great news that you are having to sleep less and feeling better! Please keep reporting.

                        Gardening is so much fun and collecting eggs sounds nice. Keep up the positive attitude dastardly. You are inspiring others here

                        Comment


                          #13
                          Hi Guys well its now been 4 weeks since my infusion of lemtrada and everything has been going very good until last night at 10:30pm. On Thursday 01/12/16 I had my first blood and urine tests, no problems with that, then last night Friday 02/12/16 at 10:30 pm I received a text message from blood watch, I had an abnormal blood result my platelet count was down to 122 and to seek medical attention immediately even if I feel well, contact your neurologist and DR which at 10.30 pm was out of the question, so off I went to the hospital emergency after 3 hours of sitting around and more blood tests I was told my count was now in the 160's not to panic and see your neurologist next week so all good. I still feel I made the best decision and are very confident of a positive result Craig

                          Comment


                            #14
                            That's nice they have a text message feature for that with instructions and glad that nothing too serious happened.

                            How did your appointment go this week with the Neurologist?

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                              #15
                              Hope the appointment with your neurologist goes well and you keep seeing positive results. Thanks so much for sharing your experiences! I'm anxiously waiting for my Lemtrada treatment to start. Still don't have a date but hopefully soon.
                              DX 2005 RRMS. Did 2nd round of Lemtrada Jan 2018. DX SPMS 2019

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