Lemtrada
Hi, I’m coming up to 5 years since my last infusion of Lemtrada (so looking forward to going from monthly bloods to 3 monthly bloods) I’m new to the group and i just wondered who else has had it and how they found it? and how they are doing? Doesn’t seem to be many people taking it anymore?
Hello, I had Lemtrada in 2009 on one of the trials. I had 3 infusions, ( I had a bit of a memory blip, so I think they were be over cautious by giving me an extra dose). Anyway, nearly 10 years after the last infusion and I haven't had a relapse since. In the two years previous to getting on the trial I had been having quite a few bad relapses (mainly affecting walking), so this has dramatically changed things for me. I can now do Zumba! I do still have problems with my bladder, cognitive problems and fatigue, but I think this was due to the damage already done pre-Lemtrada. But overall, It has been great for me. I have been told that there are other options too if I should need them in the future. Hope it is working for you. xx
@JeanetteBirdB Thank you for sharing.. that’s amazing news, I am pretty much the same as you, no new activity on MRI and they are stable. Like you have said some of the issues I have had previously are still there - a bit of brain fog and some small swallowing problems seem to linger, but overall I am happy, I can’t wait for May to drop to 3 monthly bloods 😀. I was also told if it ever stopped working I have other options or can always have another infusion of Lemtrada. There doesn’t seem as many people taking the treatment now though and I was just curious as to why. Xx