We are a charity and rely on donations

Charity Number: 1117194 (England and Wales)

Registered Company: 06000961

Registered address:
Shift.ms, Platform, New Station Street, LS1 4JB, United Kingdom

London office:
Shift.ms, Somerset House, Strand, West Goods Entrance, London WC2R 1LA, United Kingdom

©2024 Shift.ms

@lottie 

Last reply

lottie

I wish they told me this before lemtrada

After being on avonex and tecfidera, Wich didn't agree with me they now offered me lemtrada. I understand most of the side effects from the brochure and although finding it daunting I do understand the stance or the the weigh up against possible development of further ms syptoms (I have very few to mild niggles) and having to deal with life long thyroid issues. My question is: what is the one thing you wished they told you before you startend the treatment? Any tips,tricks and advice is very welcome . Also I read about people taking weeks off during and after the treatment how bad do you feel during and after? Can I drive myself there and back, should I fly my mum over to care for my daughter cause I be completely pooped? Sorry if they al seem stupid questions but I only had the convo 2 hrs ago Xxx
11
@vasy
@vasy
 

Hi @lottie I've felt very tired for 2 or 3 weeks after the treatment and was barely able to do anything other then sleep. I took sick leave for almost a month. But then it got better. Also developed a long lasting bronchitis after both rounds of treatment, so probably it better to stay away from cold and infected people. Hope this helps.

@Cheryl118
@Cheryl118
 

Hi @lottie, My experience is similar to the previous post. I just received my first round of Lemtrada 4 weeks ago. I planned to take 2 weeks off from work. My doctor told me that was more than enough. I am now on my 5th week off work. The first 2 weeks were a breeze. Then massive headaches accompanied by nausea and generalized weakness and fatigue hit hard. Its not horrible, just caught me by surprise, especially since the first 2 weeks were uneventful. I wish that I was a little more prepared for this so that I could have taken more time off work in the first place. I realize that everyone is different, but I'm typically not a person who gets sick or misses time from work. I was pretty well informed about all of the long-term risks of Lemtrada, and also all of the side effects that one can expect during treatment. I was expecting the week of infusions to be miserable, but it was actually pretty easy. I'm hoping now that the worst is over. It is also quite a lengthy process to get all of the paperwork completed, labwork, md appointments, and insurance approval for Lemtrada. You have to be patient.