Last reply 2 years ago
Starting Lemtrada soon

Hi all,
So good news is my Doctor wants me to start Lemtrada on the first week of February, bad news is by doing so means I would have to cancel my trip to Orlando at the end of March as the risk is just too big (not that bothered just happy I’m on the next step)

Anyway my Nurse has explained what will happen and that I have my own room but I’m not acquired to stay there for the full 5 days (just the first night is recommended). Anyway my question is does anyone have any advice on what I should take, how did people find the treatment and would you recommend staying in Hospital while the treatment is happening

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2 years ago

I was an outpatient all the way through. Was glad as I don’t like hospitals so less time spent there the best. I found treatment pretty easy but It is a long dull day being infused – typically up to 1 hour to set up, 2 hours saline, 4 hours lemtrada, and then another hour of saline.

Recommend loose fitting clothes and reading materials. Hope you have good wifi there.

2 years ago

My story with Lemtrada is a completely public one to read at your leisure.
What to take
– whatever will keep you amused for the long hours of hte infusion, books, tablet, laptops, crosswords etc ….. it’s terribly dull sitting there plumbed in for hours.
– Something you can track your water intake with they suggest 2-3 litres of water a day before during and post treatment and those daft hospital jugs don’t have measurements on them – the water is important it helps ward off the headaches the IV can give you
– snacks – the steroids will probably give you the munchies (I got mildly addicted to mini cheddars)
– something like calomine lotion / eurax cream / solarcaine gel / anti monkeybutt cream for the rash which usually shows on day 4.

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