Last reply 1 year ago
Post Lemtrada experience

Hi all,
I’m new to this and just wanted others experiences, what to expect, what to do, etc.
I was diagnosed with RRMS in February and started on lemtrada in march… my story, I guess the same as many, had a really bad relapse. I was numb from the waist down, numb my whole left side, spreading to my face, forgetful, missing things I would have been told, unable to walk even a little straight, stairs were a nightmare and vertigo! Can’t believe I thought it was nothing!
With a lot of steroids and then lemtrada, I’ve managed to almost be normal again. I’m 8 weeks post lem and still a little fatigue but not as bad as I was.
My treatment went well. My first day I developed a rash but it just meant the other 4 were slower. Fatigue set in on day 3, they pretty much had to wake me for everything in the hospital. Afterwards I developed a uti and was on antibiotics and 2 weeks later developed a throat infection but otherwise no side effects yet.
I am hoping to return to work in 2 weeks and wanted to know how long others waited? I work in retail so knowing I’ll be on my feet all day is tough.
Have many had reactions post 8 weeks or am I just being cautious?
Also I’d like to know if anyone has had relapses post lemtrada?
Thank you in advance ❤

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1 year ago

After the first dosis of Lemtrada i felt fantastic, could do everything normally without being exhausted or anything. During Lemtrada i also developed rashes but as soon as i told the nurses about them, they gave me an injection and the rashes dissappeared. Lemtrada absolutely is a very stron and effective drug and im sure you will get better. Just dont overdo yourself especcialy not mentally because this is ten times worse than any physical work. It is good to be cautious, but you should also have faith in the drug and hope for the best. After Lemtrada i hadnt any other side effects, well that fatigue is a normal thing i mean you are on injection for about 8 hours five days in a row. This would exhaust even the healthiest person 😀 a friend of mine said that the MRI showed 33 less lesions after the LEmtrada 😀 so this is a very very positive result.
Wish you all the luck, 🙂

1 year ago

I took 3 weeks off work after both doses of Lem
but felt exhausted and fatigued much longer than that

Also developed long lasting bronchitis both time

1 year ago

I had first round of Lem in December 2016 and did not have major side effects – chest infection and was hospitalised on IV anti biotics but recovered well enough. Getting on with my monthly monitoring and all is well for now.
As i work as a contractor, i can pick amd choose what work to do so am lucky in that respect, but felt ok to work after 6 weeks as had to recover from chest infection.
Just take it easy and dont push yourself.

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