Last reply 1 month ago
Medication

Hi I’m new to the group,I was wondering if anyone could help me, I’m on tecfederia at the moment and my consultant has decided to take me off this and put me on lemtrada can any one give me any advise about it at all as I’m very nervous as don’t know anything about it,thank you.

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Anonymous
1 month ago

Hi,

Please read my post about my experience with Lemtrada. My opinion is……. stay away from it. I may have been approved but I have yet to read any positive posts


mlgilber1
1 month ago

Hey Jenniebean! I was actually considering lemtrada, but for now we have decided on ocrevus. I’ve mostly heard very positive things about lemtrada which is why it’s a treatment I’ve always considered. I do know some people on here are on it so hopefully they’ll share their direct experience with it. Otherwise if you type lemtrada in the search bar at the top of the page previous posts will come up and I know a lot of people have made posts to give updates on their infusions. Hope this helps and I wish you the best of luck!!!


stumbler
1 month ago

Hi @jenniebean and welcome.

There’s some summary information about Lemtrada here:-

https://www.mstrust.org.uk/a-z/lemtrada-alemtuzumab

And do look through previous posts as suggested by @mlgilber1 . A “Lemtrada” tag has been automatically added to the end of your original post. This can be selected to access the previous posts.


stumbler
1 month ago

@russ9141 , your post is not that helpful to someone who is considering this treatment.

It’s the old adage that 99 people out of 100 will complain about a bad experience, whilst only 1 in 100 will comment on a good experience!

A life with progressive MS is difficult enough to contemplate, without having to deal with negative comments on proposed treatments.

Everyone is entitled to an opinion, but sometimes it’s more empathetic to keep that opinion to yourself.


lacemister
1 month ago

Thanks stumbler , I am due to start treatment Monday so whilst I accept the risks certain comments do unsettle people. Have a good day everyone


mandy121
1 month ago

Hi I was advised to consider Lemtrada after being on techfidera (which wasn’t working for me). I decided to gove Lemtrada a go although I was quite nervous had the treatment end of June and am feeling better. Had a few reactions during treatment but nothing that wasn’t expected. Next week will be month 2 blood tests and hopefully will see improvements.

Good luck with whatever you decide remember it needs to be right for you.


jenniebean
1 month ago

Thank u everyone, do u have to stay in hospital or have to keep the cannula in for the 5days?thanks

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