Should I be scared from lemtrada ? Scared really scared

I got option to start this treatment but I’m so scared. If it’s no too strong for me, I don’t know what to do. I don’t have really with who to talk about it . Any advise will appreciate. Thank you

Treatment decisions are personal. Presume they have given u the info to read and decide? There are some pretty serious possible side effects but the numbers who get them are low. In my mind it was all about risk. My biggest fear is further losing my mobility and the use of my arms and legs so the chance to have a drug with such high odds of stopping/ reducing relapses to me was a no brainier (pardon the pun). I went into it prepared to be really poorly, actually I sat the first 3 days working on my work lap top, BP cuff on one arm and IV in the other. The 4th day I was fatigued and got the rash however the 5th day I still had the rash but felt better. At the moment I am having a rough time with flare up of old MS symptoms but they warned me this might happen. The other thing to think about is there is a strict monitoring protocol of monthly bloods and urines for 4 years or 5yrs if you have another dose in 12mths time. Feel free to ask me if u have any other questions but be aware we are all different so one persons experience doesn’t guarantee to be yours.


Thank you snowqeen

What does your neurologist think you need? If he/she thinks that Lemtrada offers the best balance of risks and benefits for you, then that is a very valuable piece of information.

They don’t dole these drugs out for fun - they only recommend them if that’s what they think gives you the best chance of staying as well as possible for as long as possible.

For sure, the thought of these heavy-duty drugs is scary. For me, they’re not half as scary as the thought of uncontrolled RRMS making mincemeat of my spine and brain. There are few un-scary options in this game, I’m afraid.

It is your decision to make, of course. For my part, I have always listened very carefully to what my neurologist thought I needed.


(now 4 years on Tysabri and no relapses so far, fingers crossed)

Hello Alison, of course it’s true. I made my mind up pretty much, what putting peace in mind is even if something will come up I will be after strict protocol . And hope it’s will make huge improvement in my condition. Was offered tysabri but got tested positive on virus, so it’s off the table for me, I know people doing well on it. Thank you for reply