Hi can some one tell me a bit more about Lemtrada. I have googled it. The only thing I have read about qualifying is 2 relapses in past 2 years. But I thought I had read some reviews on here your neuro has to score your walking ability to see if you qualify. Is this right and if so what is the walking criteria. I have had my 2nd relapse in 10 months which have required stays in Hospital as been on intravenous steroids. Got out Hospital last Friday started back work on Monday. Then Tuesday night in house took a turn was in myself had to crawl from one room to next. Then took one yesterday at work. Had to be carried in in/out taxi and in to House. A turn for me is loosing all coordination no feelings in legs and arms. Cant walk even holding on to anyone. My legs buckle from under me. Speech also goes slurred. It is almost like being paralyzed,or as if I have took a stroke. Always seem to last 3 hours before power starts to come back. I used to take maybe 3/4 of these a year. I have had 8 in past 6 weeks. I get very frightened when I take these. I felt suicidle last night. I cried and cried. Think it has now got to stage I have to give up work move back with my Mum. I would then have no independence and become Recluse. On top of these turns my everyday symptoms is poor balance. I only walk 5 meters out to a taxi using my sticks. This is furthest I walk in daily basis. And there is not a day goes by I have not got pain somewhere in body. I emailed MS nurse. She informed my Neuro what is happening with me. And that they might need to change Meds. I have been on Tecfidera for 10 months. She also said I have went back to work too Quick. I am going to take couple days off again. But how do you know when right time is to go back. I was off 7 weeks last year and started loosing confidence. I don’t want to be like that again. Just don’t know what else they can do with me. I have read good reviews about Lemtrada. And wanted to know if you think I would qualify and would they help me. I have an appt in May with Neuro. Also had MRI last week. Told me no new lesions but hard to see if lesions are growing on top of old ones. And to discuss with my Neuro.
lemtrada is one of the second line drugs.
you have had one of the first line - tecfidera.
so you probably qualify for lemtrada or tysabri.
don’t rush back to work because it’s a lot to take on board.
try not to over think it all.
those turns sound awful.
i’ve had 2 or 3 similar events - don’t want another!
i prescribe a week of duvet days or, if this sun continues, deckchair days.
drink plenty fluid and rest.
Thanks Carole. I am gonna just do that, but knowing my luck it will rain x
Lem is licenced for use as a first line drug here in the uk.
Based on the time you are having I think you should definitely qualify for lemtrada. Given that this is all happening even while you are on Tecfidera you should also qualify for Tysabri which is another very effective treatment - it comes with its own risks which I’ll let you read about yourself.
Good luck with getting something that works!