shelbates 15/03/18
Last reply 4 months ago
Lemtrada

Hi all, I’m 18 and I recently got diagnosed with relapsing remitting last October. Just under a week ago I finished round 1 lemtrada and I’m just wondering how long I should be staying in doors for as at the moment I am just staying in bed which I hate :/ thank you 🙂

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stumbler
4 months ago

Hi @shelbates and welcome.

That’s been a bit of a whirlwind for you, diagnosis to treatment in under 6 months! It sounds like you have a very proactive team.

People recover from Lemtrada at different speeds. There are no hard and fast rules, just do what feels comfortable and don’t push yourself too hard.

The other thing is that you need to avoid infections. To this end, anti-bacterial hand gel will be your friend.

Personally, I have no firsthand experience, but others will comment soon, I’m sure.


marcyg921
4 months ago

Hi,
Honestly you can go out when you want. There’s no set time on when someone recovers from Lemtrada, some people are back at work the next day after having the treatment. It all depends on how you feel so if you feel up to going out even for just an hour then I say go for it just as long as you listen to your body.


shelbates
4 months ago

@stumbler yes it’s all been so fast I’ve still not taken it all in properly. But yeah I feel great, no side effects yet apart from headache every now and then. @marcyg921 yeah I am a proper worrier so having time off work but hope to be starting again soon as I feel fine 🙂


marcyg921
4 months ago

Its perfectly fine to be worried @shelbates, it is a scary treatment and it does take time but don’t forget the first step is always the hardest, I was the exact same after Round 1.


tracyd
4 months ago

@shelbates

The headache – are you still drinking 2-3 litres of water a day ? It helps with the headache.

If you feel up to it, then get up, go out have fun.

Be super OCD about hygiene, treat everyone like they are a toxic plague carrying swamp monster from hell and use a lot of anti bacterial gel

My Super OCD habits:
– Wear a long scarf round your neck – use it as a barrier between pretty much anything you touch – door handles / stair rails / escalator hand bits etc
– Menus in restaurants – revolting germ palaces, if you need to touch use antibac to clean the menu off
– don’t touch your face or if you do – antibac

(see the pattern forming?)

Go out and live – the longer you wrap yourself in a bubble the lower your immunity to the real world around you becomes xxx


shelbates
4 months ago

Thank you that’s really helped, I’ve jot been drinking that much but I am definitely going to start drinking more and yes I am going to start going back out, I’m going back to work in 6 weeks the hospital advised @tracyd

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