Lemtrada
Hey everyone, hope you're all having a nice Friday.
I just wanted to pop on here and ask if anyone has any experience with Lemtrada?
It being reccommended to me by my Neurologist on the basis of how effective it is and how active my disease is.
I've read up on it and the side effects, if experienced, sound kinda horrific.
I know it my choice and if the treatment works the way it should it could deliver the best outcome. But I guess I'm just a bit apprehensive.
TIA
Hi! Just finished my first round of Lemtrada yesterday! I did the same as you, read up so much on it and thought it would be hell on earth. It was actually a pretty breezy week... I'm literally day 1 at home so I can't update further than that but I've read heaps of positive stories on here too. I think if there's a few things I'm learning, is that don't get yourself in an internet hole, be knowledgeable but don't over-research, you'll drive yourself crazy! And also be very aware that everyone is different. I read so many hectic accounts of people struggling to cope on this strong drug, but personally, I can walk, am strong, young, fit and able. In comparison to someone who has had MS alot longer, with more disabilities already, of course the experience is going to be different, you have to consider your own context with MS alongside everything you read. And finally, I would say go for it. It's the hit it hard and fast approach. I had a really hard time wondering why my neurologist offered it to me when I consider myself pretty okay, but the idea is to not let your baseline get worse whilst you try other things. There's risks obviously, but I'm pretty happy that I've gone for it. No point waiting for things to get worse, especially if you're experiencing quite a few relapses. I went for it, and I reckon I've only ever had 3 bad ones. :) Sorry for the essay!
Hi @loretta93 thanks for responding, I definitely went too far down the rabbit hole when researching this one. Usually I'm pretty good at limiting myself to reputable sources but I had more questions than the usual sites were able to provide. I already have other autoimmune and autoinflammatory conditions, so I was keen to know more about the impact that may or may not have. However I've come to the conclusion that the benefits will (most likely) outweigh any negatives. I just need to accept that there is a risk and hope that it pays off. I think for me this is an opportunity, I'm newly diagnosed and haven't had any major debilitating after effects from the relapses Ive had. So it's kinda now or never? Which boils down to it being worth the risk. Thanks so much for your reply, I hope your treatment continues to be a success! ❤️