Forum

good old lemtrada

Hope everyone is as good as can be! Was wondering if anyone else has been told they can have lemtrada,but still have not heard when. My story being, I was told Nov I will be put on it before the end of the year. Still waiting! It seems like the blind leading the blind(no offense intended) and when I talk to ms nurse I’m told they don’t know who is going to monitor my monthly blood tests etc etc. Can’t ever get to talk to Neuro either,and he told me to stop taking inter feron straight away! What I’m asking is. How long have people waited since being told they can have it? To actually getting it. Sorry for moaning,I’m 99% of the time happy go lucky! Thanks in advance

Hi, can’t comment on how long you would have to wait, but I had my 3rd lot about a month ago after seeing my Neuro in August. Had an MRI in September so had to wait for the results of that, so about 3 or 4 months for me to get a date. As to the blood tests I always get mine done at the doctors so I always presumed they monitored them. Hope you get a date soon.

Thanks crackers. Just sent you pm

Hi,

I was originally told I was would have my first 5 days back in January. I’m now booked in for next week. My experience has been that the clinic/hospital struggle to staff the 5 day infusion hence the 4 month postponed date. The hospital I have been attending the MS clinic in only has 2 infusion nurses that can administer the lemtrada. Fortunately for me, the MS nurse I have has taken it upon herself to support with my monthly blood/urine tests so that’s one less worry post treatment.

Hope you get sorted soon if not done already! If you have had your 5 days, how was it??