@Lisac22 

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Lisac22

Lemtrada round 3

Need some advice! I was diagnosed with MS in 2014 I deteriorated quite quickly after being diagnosed! I was transferred to a different hospital and offered the chance of lemtrada The first session went really well and was back to work within a week, and for about 10 months after felt good but by the time I was due the next course of treatment I relapsed! I had my second course and this time was really poorly, but again for around 10 months i was feeling good, then relapsed! For around a year I felt good then bad, Went on steroids got better felt poorly again! Over the 2 years I had MRI’s sometimes they’d show no signs of active disease another it would show cause for concern! Last year I had another relapse, I was arranging a surprise party and I think generally it run me ragged and I become ill! The MRI after the relapse showed new lesions, they suggested Chemo therapy or a 3rd course of lemtrada, this was back at the start of the year and although I decided to go for lemtrada as chemo scared the life out of me, it had to be put on hold due to me having a holiday booked and not being about to travel without an immune system! The last 6 months have seen me in good health and it’s started to make me wonder whether I actually need the lemtrada now! I’m obviously not saying I’m cured or that those lesions won’t be there anymore but I’m starting to wonder that if I had another MRI that it might be different! I want to have the treatment when I really feel like I need it rather than making myself poorly when I’m feeling ok! I’m kind of hoping that because I’ve been well that the MS is again not active and was only active because I’d had a relapse all those months ago! Any advice would be appreciated!
@Noshin

Hi @Lisac22 , I just read your message with interest because I'm in a similar situation. I was offered a 3rd round of Lemtrada when I was feeling poorly and it had to be delayed thrice because I have had coughs and colds back to back over the last 7 months. Now I'm feeling fairly stable I'm wondering whether I should take the Lemtrada at all. If you don't mind my asking, what happened in your situation? I'm really confused. Will taking the 3rd round delay and potential relapse and keep me in a better stable position than I am in now? Or should I save it for when I really need it? I look forward to hearing from you. I know you wrote your post many moons ago and I hope you are well. Warm regards, @Noshin

@deano

My consultant stopped giving out lemtrada London hospital , I had 2 rounds interesting I was sick/ill after round 1, and round 2 was a breeze (less doss, 3 days instead of 5 days) My comment would be if you are RRMS, then you have times when you recover. Would I do R3, all those monthly Bloods tests and risks. its strong stuff - prob the best drug out there . Good luck with making your mind up - I am generally rubbish at making decisions : )