@Kitty369 

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Kitty369

Lemtrada treatment - what to expect

Hi After some practical advice from anyone who has had Lemtrada on a day case basis. I am due to start next week, I have a letter saying I need to be there at 7.30am on Monday morning and that’s about all it says.... 😕🤔 We live out in the country and have 2 school aged children and I really need to work out the plan for each day. Will I have to be there at 7.30am every day? What time can I leave? Should my husband stay with me? Will I be able to ‘do’ anything afterwards or will I be wiped out?
@Noelie

@kitty369 When do you start your treatment? How far is your hospital from home? Don't plan to do anything else while on treatment. My guess is that you would feel guilty resting at home so I would recommend staying in a hotel near the hospital where you have nothing else to do but rest, and you'll need to rest, during and after treatment. Did I mention already that you'll need to rest? Do you have family or friends that can come and help for a bit? We are all different but I think for me, just the responsibility of having to think of planning a meal was too much. Here's what should happen during the day: they put a canula in your wrist, they do the steroids intravenously first, then alemtuzumab, when you think it’s done for the day, they give a flushing (just saline solution), the whole process can take up to 8 hours. They come and do observation every hour, (blood pressure, temperature, pulse, oxygen level), you need to drink a lot to eliminate the medication waste, and to keep away the headache (have some paracetamol with you). The steroids keep you awake at night, (some hospital provide sleeping pills, others don't so I advise to get some prescribed by your GP beforehand). A common reaction on the 3rd day is the skin rash, antihistamine will calm it down (see sleeping pills above: same advice, or it might be available over the counter). Lots of people report feeling very tired from the treatment, as i was already a zombie (my daughter has always been a terrible sleeper), i didn’t quite notice the difference 😀 Bring some entertainment with you, some funny book or something, the days are quite long. The canula stays 24/7, after a while the vein can become sore, so they’ll switch to the other wrist. I hope that helps. Good luck x

@Kitty369

Thank you for this, I start on Monday the 12th. I do have family and friends, but wasn’t planning to over involve them my husband will be around and is very capable. This is really useful, thank u so much I have a bit of a cold today as well so might try and get my bloods taken again this week and will look into sleeping tablets while I am there. When u say th days r long, can u remember what time u left each day? Thank u for your help So the canula stays in all week? 😳 think I might struggle with that....