Last reply 1 year ago
New to lemtrada

Hi all

I have read a lot of posts on here regarding lemtrada. I am going for my initial appointment in a couple of weeks, and am feeling very excited to start. At first, I chose not to opt for lemtrada. But then felt I was waiting for a relapse to happen for my treatment to be esculated anyway! But I am now feeling much more positive about starting treatment.

I am a primary school teacher and I was just wondering how long people would recommend taking off. I don’t want to risk going back and having low immunity, however likewise, I don’t want to be off work for long either! I just know the children will be a breeding ground for germs!!

Thanks Sam

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1 year ago

@samantha_louise , you want to read @tracyd ‘s blog about her Lemtrada journey :-

1 year ago

I had lemtrada in December. I’ve been off work for a while, not because of lemtrada though. Mainly other ms symptoms have caused the absence from work. I will be honest though lemtrada is hard, mentally, emotionally and physically. But as long as things haven’t been too bad for you up until now you should really have any problems. Germ wise you will be given drugs by the hospital doing the treatment for bacteria and viruses, just keep up with general hygiene like hand washing and you should be fine. Use the hand gels a lot and wash your hand a lot and there shouldn’t be a problem.

1 year ago

Hi @samantha_louise

In regard to the germy little plague monsters at school, one of the things that seems to have worked well is a reward system – gallons of anti bac all round the room and if one of the little darlings needs to ‘interact’ they clean themselves first and get bonus rewards for reminding you to ‘clean them off yourself’ after 🙂

1 year ago

How is Lemtrada going for other at the moment?

1 year ago

I had my R1 the last week of November so almost 3 months now and I am still suffering with major fatigue….having said that being newly diagnosed my mind just doesn’t stop so I only manage around 7 hours a night sleep….still be prepared that you could go either way….some people are back to work within just a couple of weeks…we all seem to react differently..good luck xx

1 year ago

I just had Round 2 about 2 weeks ago and I’m still off work but all the advice I can give you in terms of how long to take off work is that it all depends on when you feel ready to go back. Lemtrada, as great as it may be is a powerful drug and more than likely it’ll wear you out so it’s important to not get cocky with your body and overdo it. As for germs, well you can never really avoid them anyway but you will be given anti-virals upon discharge to help protect you from the main infections but it’s important to as my nurse says ‘not wrap yourself up in cotton wool’ and try to get back to normal when you can.
Best of luck with Lemtrada.

1 year ago

Thanks for all of your comments. Hopxefully it goes well 🙂

1 year ago

I had my treatment 3 weeks ago although everyone is different I was exhausted until yesterday I would give it a couple of weeks

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