Last reply 2 months ago
Little lemtrada update

Hi lovely people x

I just finished my first round of lemtrada treatment yesterday and so far so good I feel fine. The first day of treatmemt gave me a couple of reactions (fever, chills, headaches and a little mental breakdown). But after that my body took it so well and everyday was smooth just really long (about 8 hours). The whole team was extremely caring and I felt like I was in the best hands. Now it is time for me to take it a little easy and rest. Hope there is no bad come down to follow! I did not even get a rash. My question to all the lemmie peeps out there. Any reactions after the treatment? And I am not asking to scare myself or others I am just curious and wondering how all of you went ☺

Lots of love and positive light to you ❤

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zarah
2 months ago

Hey @janabananaa am now 4 weeks post 1st round n I haven’t experienced any side effects since being out of the hosp if anything I feel great compared to how I was before treatment. Just make sure you continue to get rest for the first few days makes a big difference l. Xxx


vixen
2 months ago

Hi @janabananaa, give yourself more time to rest than you plan. Take it easy and don’t push yourself in any way. Love your minor-aside comment that one of the side effects was a mental breakdown! 🙂 Wishing you good health


janabananaaa
2 months ago

@zarah glad to hear it went well for you too! ☺ hopefully the recovery doesn’t take too long. Not used to being at home all day haha but I really feel how exhausted my body is.. rest rest rest I guess ☺ much love X

@vixen thank you ☺☺lol I think the nurse thought I was a psycho but hey it’s good sometimes to let it all out. I try and take it easy. At least there is nothing I have to do and nowhere I have to be. Just rest and rest… aand rest X


highheeledfagin
2 months ago

I didn’t get the rash, either. For the first week and a half I felt great because I was still buzzing on the steroids. I wasn’t really able to sleep for long and got headaches if I didn’t stay hydrated. I didn’t have much of an appetite for quite a while.

I am 4 months post R2.


janabananaaa
2 months ago

@highheeledfagin love your name 😂 I actually did get a rash and my skin looks like a dead person’s one I just noticed it after the treatment. Then I felt really exhausted for 2 days and now pretty much normal again. I get what you mean with stating hydrated I never had that much water in my life.. but it’s good! Glad you went through round 2 with no complications ☺ was the second round similar to the first or did you feel any difference? Ouh and I noticed when I sleep I have the most intense dreams like so much action that I wake up exhausted. Must be the steroids lol


highheeledfagin
2 months ago

I had actually stopped dreaming/remembering my dreams years ago, then it just flooded back after R1. Now I dream every night.

R2 was a lot easier compared to just how wiped out I had felt the first time – I spent most of my treatment asleep the first time but was wide awake this year.
Fatigue has been better, no UTIs so far, but I did have some seriously nasty headaches for a while.

In general, I feel less…MS-y/more clear headed than I have in a long time but still need a day of rest of I push myself a bit too far.

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