I have RRMS. I was diagnosed about 6 years ago but it has become very active in the past 2 years. My neurologist has now offered me lemtrada (alemtuzumab). I am currently on Tysabri which seemed to be going well when I first started Ty but I have had 2 relapses recently hence i am considering changing treatment. The way that I see it is that MS doesnt wait around so I shouldnt neither- i need to be proactive.
When I first started Ty, I used to come home from the hospital and would feel better immediately. I no longer feel amazingly well after a Ty infusion. This coupled with my recent relapses whilst on Ty lead me to question its effectiveness for me. However I also think if it wasn’t for the Ty may be I’d be in a much worse condition now. So although I can no longer feel the benefits the Tysabri medication is working.
I have read about the rebound effect of Tysabri. Is this true? Will I increase the risk of relapsing by coming off Tysabri?
Has anyone had any experience of taking Lemtrada and be happy to share your story? How was the Lemtrada in reducing your relapses? How have the side effects of Lemtrada been?
Any info is most welcome.
Thanks
I discussed this with my MS nurse today. She said the risk of rebound is real for those who come off Tysabri and dont take anything else. But in my case I will be starting Lemtrada so she said the rebound effect may not apply to me.
she said that as my MS is active nobody can guarantee that I wont relapse again and hopefully the lemtrada will work for me in preventing a relapse. I wouldnt feel as comfortable with stopping Tysabri (and starting lemtrada) in the hope of limiting my rate of relapses if it meant that I would have a rebound relapse.
Fair enough, but that’s not the view of the Professor of Neurology at Barts & London, if you are JC positive.
This blog covers switching from natalizumab to alemtuzumab.
http://multiple-sclerosis-research.blogspot.com/2014/05/clinic-speak-switching-from-natalizumab.html
What if you are jc negative?
Oops sorry, I was too busy watching the football and answered incorrectly. Assuming you are negative then option 1 looks to be ok.
Oh thank you for the info whammel
You might get more direct experiences of lemtrada over at https://shift.ms/forums/forum/speakeasy, as they always seem to have threads running concerning the treatment.
I hope you find some useful information.
1 Like