Last reply 2 weeks ago
Lemtrada Survival kit

Hubby starts Lemtrada round 1 in 10 days.

Anyone have suggestions for things we can take with us to help keep him comfortable during the infusions, keep us distracted and overall help the week go by smoothly?

This is new to us and a little scary so any tips would be greatly appreciated!

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stumbler
3 weeks ago

Hi @vanderheide_l_amy and welcome. It’s good of you to join us on behalf of your husband.

Whilst you’re waiting for responses, you may want to review previous posts. These can be easily accessed by selecting the “Lemtrada” tag that has been automatically added to the foot of your post above. 😉


vanderheide_l_amy
3 weeks ago

@stumbler thank you! New to this platform so thanks for the tips 🙂


beckybarnes
3 weeks ago

Hi, I’m one week post 1st Lemtrada treatment. Take drinks that you like , I found water or flavoured water the best as you do develop a weird taste in your mouth that makes things taste odd. Mints were good for that also. Take reading material, ipad/tablet if you have one. I varied between reading, internet , sleeping, knitting and watching the general goings on in the ward as it was very busy. I had my daughter and a friend come in several times for an hour or 2 over the week. Once I hit the midway mark it passed pretty quickly…..during the actual treatment I hardly noticed any reactions apart from fatigue but the weekend following was a bit rough. I spent one day in bed with slight nausea and headache and a rash but the following day was much better. Hope it goes well for you, good luck. x


sue50
2 weeks ago

Hello, I’ve done 2 rounds now and the most important thing is to DRINK WATER LIKE A REHYDRATING CAMEL. I didn’t know this for R1 and had a terrible headache D1 & that evening. Once I was told this R1D2 was much better, and R2 was a breeze. Harribos/ mints. Kindle/Netflix anything for boredom.


vanderheide_l_amy
2 weeks ago

@beckybarnes and @sue50
Thank you both so much! Will make sure to have drinks galore on hand. Good tip with the flavoured water and mints, he will definitely appreciate those.

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