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@Carly 

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Carly

Lemtrada - Tell me, tell me

Hello, So I found this website because I needed support. Meanwhile found help and this help decided to push me towards Lemtrada. I was reading a post a couple of weeks back about how Lemtrada changed that person's life, and how it helped others and how others are going to fight to get it. So QuestionSS: Lemtrada: yes or no? 2 or 3 rounds of treatments? Side effects - At the time of the infusion and after? Did it help? if yes in what way, if no in what way (what was suppose to change and has not) I'm on Tysabri, will go on Withdrawal, any suggestions? What can I do to get ready? Any other comments, suggestions are very welcome. I do know that this is not clinical advice and nothing is formal, it's just friendly advice between MSer's. Thanks! Carly
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@Stumbler
@Stumbler
 

@carly , here's some detail from our side of "the pond". http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada We have members, who have had this treatment and members, who want this treatment. In the UK, it has been approved, but we still seem to be waiting for it to be implemented. You could try searching the forum for previous discussions, using the forum search function (the magnifying glass, top left) and searching for Lemtrada. I'm sure there'll be some members along soon to share their firsthand knowledge.

@US-Emma
@US-Emma
 

Lots of good questions. Lemtrada- definitely & soon 2-3 treatments: 2 then wait & see. If you are newly diagnosed the 2 could last 6-10 years. If have had MS longer you may need a dose 2-3 years after #2 Having Lem does not prevent you from using other meds down the line. I had Lem last April in Germany & blogged about it. Here are some specific blog pages to answer some more of you questions: What happens during the week of infusion/infusion side effects: http://lemtrada.blogspot.com/2015/01/considering-your-lemtrada-protocol.html Potential side effects after infusion: http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html Did it help there are many pages on the blog about various improvements: http://lemtrada.blogspot.com/2014/07/i-had-omg-moment-this-morning.html http://lemtrada.blogspot.com/2014/07/week-16-seeing-improvement-in-ambulation.html http://lemtrada.blogspot.com/2014/11/still-improving.html There are others, I just picked a few. Tysabri withdrawl is real. I was a Ty to Lem switch with +JCV titer and 6 years on Ty (so high risk PML). I had only six weeks between last dose of Ty & first foes of Lem. It would have been sooner (get as short an interval as you can, two weeks is common now) but I had to arrange travel to Germany. If you are JCV+ they will likely do a screening MRI during the switch period to check for PML, scan is clean, you get Lem. If you are JCV- an MRI is not needed. What can you do to get ready: get in the que (line, on the list, etc) for Lem & you docs will guide you. There are some blood tests, ect here are some of the basics they test for: http://lemtrada.blogspot.com/p/testing-required-recommended-prior-to.html Whew- I think that was all your questions. I am happy to answer more anytime :) Take care, Emma