reds44 01/05/17
Last reply 9 months ago
LEMTRADA @TRACYD

Well have seen on several lemtrada posts that you are the woman to ask. I have had MS for 16 years never any problems legs have gone the 3 years and they really got worse after the 1st round, Had 2nd round end of Jan. I have heard that it does not work well with older people (54) and people that have had MS for a long time. I am wondering where people get their information from?

Thank you in advance.

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tracyd
9 months ago

@reds44

Apologies for hte dealy in replying, it’s been frantic at work after the bank holiday and this is the first chance I’ve had to log on.

I see you’re in SC so time difference might be a challenge, but happy to talk, in the interim have you joined either of the 2 big Facebook groups for Lemtrada ? There are a large number of people who are older with long term diagnosis who have responded very well to the treatment and seen their progression halt and improvement in symptoms.

There’s a saying in the community, it’s a marathon not a sprint, that this isn’t a magic bullet and that after round 2 is when those diagnosed for longer stabilise and experience some improvement.

I would highly recommend looking at a lady called Charly Barnard’s posts in the Lemtrada for MS group which is the more global group (that group however does seem to have a larger number of drama and crisis people in it) The Alemtuzumab for UK and Ireland group is a more pragmatic and calm environment to discuss the treatment and read about others experiences.

You have a friend request, I’m happy to share contact details for Skype / Facebook Messenger etc xxx


reds44
9 months ago

@tracyd I do belong to both groups on FB and I learn a lot from them, like I’m not the only one who has gotten worse since treatment I am 14 months post when I started I used a hiking stick for a cane now I use a rollator 24/7 the drug maker does not have any negativity about this drug. So I have also read on Shift other people having big problems, same as me having a lot of trouble with walking which happened after the 1st infusion. Do not hear much about that on any of the Lemtrada web sites. Thank you for your response. I learn also on these sites, just wonder where everyone gets all of there information from.

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