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    New to Lemtrada

    Hey all, my dr first brought up switching me from Tysabri to Lemtrada yesterday when I was at my typical check up. He said I had tested positive for the JC virus and that after 8 years it was time for me to try a different treatment. I canít lie though the more I research the more Iím nervous about the switch. I have a family friend that has ms as well and was put on Lemtrada only to later be diagnosed with melanoma. My biggest question is anyone that is on Lemtrada are the positive effects enough to out weigh the negative?

    #2
    Hey, I don't check in here very often and I just saw your post. Lemtrada changed my life. I now am way more active than I was before. If you look in the history you'll see where I and many others have documented our progress.

    As far as your concerns over melanoma are concerned, they are valid. It is very important to get a skin check every year after you have had Lemtrada. Also, don't slack off on getting your monthly labs done. If you stay up on all the monitoring then you will probably be fine. Good luck and I hope you find a DMT that you're comfortable taking after Tysabri!

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      #3
      Many people do well on Lemtrada but I donít think your neurologistís reasonings are sound. If he/she is not giving you a choice I would definitely get another opinion if that is possible in your region.

      Where I live the neurology group avoids Lemtrada at all costs because of the risks. The most common serious risk is thyroid damagae.

      Although, when people report dramatic improvement in their MS, it makes me wish for such an improvement. My opinion (that is humble) is that our biggest enemy is the disease itself.

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        #4
        Hi Kyle,
        I know you posted quite a while ago but I thought I would respond because I just did my 5-day round of Lemtrada in October (blog url in my profile, if interested). As someone else mentioned Lemtrada has ALOT of scary side effects so you need to be completely confident in the Neurologist who is going to take you through the process. It took me a month to decide.

        I did a lot of reading about patient experiences on message boards and non-drug company sponsored blogs. I am trying to pay it forward by keeping my own. Reading that helped but the real deciding factor was my doctor and his medical team. He is a University doctor and has been working with Lemtrada since it was in the trial phase and he has developed his own protocol over and above the Genzyme standard, they pay for. For example, he tracks my T & B-cells separately because of the possibility of secondary autoimmune issues when your B-cells come back too fast compared to your T-cells.

        There was an article written in 2017 where researchers looked at unreleased trial data that showed this to be the case. So that would be my recommendation to you or anyone else considering Lemtrada. Be confident in how comfortable your doctor is with this medication.
        Hope you are doing well,
        Amy

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