Last reply 2 years ago
My week on Lemtrada… Not so bad!

Hi guys, I hope you are all well and getting ready for the holidays! As some of you here might already know, I had R1 of Lemtrada last week, and I am now 8 days post treatment. I wanted to share my experience with you, because I thought it might help people that are scared of doing it or struggle to make a decision about treatment. I remember that before starting I was panicked to death and a lot of you offered me amazing support and help, so thank you for that!

Anyhow, here’s how it all went:

Had my treatment at Kings College Hospital in London where they keep you overnight for 5 days. I got admitted in the evening around 6pm, did some bloods and urine tests and settled in my new room. I had my mum and my boyfriend with me and they helped unpack and get everything sorted for the next day. I was lucky because I was in a room with a very nice chatty lady, she wasn’t there for Lemtrada, but we got along very well throughout the week and it was great to have a laugh with somebody. First night was quite rough for me because I never had to spend nights in the hospital before in my life! So around 2am I almost had a panic attack because I was feeling very uncomfortable and scared in there (btw, if you are going to stay overnight like I did, better bring earplugs). I didn’t manage to sleep until 6am when the nurse came in anyway to take our blood pressure and temperature (they do that every night at 2am and 6am).

Day1: “Woke up” around 8am, had breakfast, and I felt like a little zombie from the sleepless night, so I went and got myself a coffee from Costa and went back to bed. The told me that we are going to start Lemtrada around 2pm, so basically I had the whole morning to do whatever I wanted. Fast forward 1.30pm, cannula was in (my veins are absolutely tiny and shit, so if you can believe it they had to bring 2 doctors to find my veins and put the cannula in lol!!), steroids were going into my body. Instantly felt that disgusting taste in my mouth, so mints really helped. 2pm, time to start Lemtrada. Finally the big moment had come! The nurse brings the infusion, she covers it with a nice Genzyme black bag (of course, it had to have the company logo on there …. duuh), and there we go, I was hocked to that for the next 4 hrs. I was drinking massively, so I was going to the bathroom every 20 minutes. My friends and family were there to keep me company, the only issue that I had was a slight side headache, but it went away with paracetamol. After 4hrs, had a quick flush, and that was it!

That night was a bit rough as I has a fever spike and it took the doctors a while to manage to get it down, but in the end my temperature got back to normal and by the morning I was ready for the second dose. Just to be sure, I had extra bloods done and a chest x-ray to eliminate all risks of infections. Anyways, everything was fine.
Side effects: headache and fever

Day2: Started in the afternoon again, I spend the morning watching series and chatting with my nice roommate, I also made friends with the nurses. Again, 1.30pm, steroids got in, 2pm, Lemtrada for 4hrs, and then flush, and that was done! I had some tachycardia, but the doctors checked my heart and said that everything was fine, and it went away by the end of the day. All I can say is that days are long in the hospital… Take with you everything that you can. I had my tablet, my laptop, magazines, kindle …..etc.
Side effects: short term tachycardia

Day 3: Same as before, nothing special happened, I didn’t even get the rash that I expected. Days were long, I was extremely bored. I was sleeping really well though because I asked them to give me sleeping pills to stop the insomnia caused by steroids (good tip for you guys in case you have the same problem) …soo I was full of energy during the day!
Side effects: none

Day 4: OMG, this day was soooo long, I thought time had stopped. I had long chats with my family and friends and watched a couple of movies. I was lucky to be on the 9th floor of the hospital, and my bed was just next to the window, so I had an amazing view of the fireworks that night.
Side effects: none

Day 5: It was my birthday! And I got to spend it in the hospital hahah. Everyone was really nice, wished me happy birthday and we started lemtrada earlier so I could go home in the afternoon. I was a bit itchy that day so I got and extra anti-histaminic injection and the itchiness went away in about 30 seconds.
Side effects: a bit itchy

So, on the 5th of November I was out of the hospital and home by 4pm. I won’t lie, I did feel like I was carrying the weight of the world (literally) on my shoulders. I did not feel bad, just extremely tired. Got home, had some cake, opened a few gifts and went to bed.

Ever since I came home I had good and bad moments, in the good ones I completely forgot that I had Lemtrada only a week ago (i feel completely normal), and in the bad ones I just try to rest as much as possible. I have 2 weeks off work and then another 2 working from home. I am taking my antibiotics and antivirals as prescribed and spending my days reading, watching movies and just relaxing. I am still drinking plenty of liquids and staying inside most of the time. In general, I am just being patient with my body to recover.

Anyway, that was it, my first round of Lemtrada! I can honestly say that I was scared to death and I expected much worse but actually it went pretty well.

I hope that this post helps someone, and if you have any questions, please contact me, I am happy to help xx


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2 years ago

Hello Silvia, this was the longest post ever! This is going to be so valuable for those who are often on here asking about Lemtrada. Sounds like you are the model patient. Well done for getting through everything with such determination, keep it up and all the best x

2 years ago

Thank you @vixen, I hope that my post can help those in need x

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