Last reply 3 months ago
Lemtrada worries

Hi guys. This is my first time posting here. I was diagnosed with relapsing ms in November last year. My Neuro has recommended Lemtrada as I had a pretty nasty relapse which has blinded me in one eye. Ive been given a date to start Lemtrada the 18 Feb this year and as the date gets closer I am questioning my decision to have this drug for fear of the side effects. Ive been researching the benefits of the drug but still have this niggling doubt. Are there any members that decided to ride out the natural course of MS rather than be pumped full of chemicals? and if so do you regret not taking a DMT?

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4 months ago

Hello @becykbarnes, welcome to this delightfully refined club! There are lots of posts on here on both subjects if you use the search box. I don’t think anyone taking a DMD does so lightly, it needs to be given great consideration. There are of course good arguments both ways, it really is due to individual choice. One word of advice, do your research using official sites, such as this, or MS Trust/Society. There are a lot of scaremongers out there. All the best, hope you reach the right decision for you x

4 months ago

I had Lemtrada in April last year. Yes, it does drain you of everything, the monthly blood tests are a nuisance, I get regular UTI’s and subsequent thrush (sorry fellas), you have to follow a pregnancy diet for the first couple of months, the medications are a nuisance, catching a cold is awful BUT….
I do feel that the positives outweigh these negatives. I haven’t had any relapses (touch wood) and my lesions have decreased. It really is an individual decision, it is an invasive therapy but I feel like the more intense the therapy, the better the outcome. Good luck with whatever you choose, but if you can get past the nasty stuff, Lemtrada is amazing.

3 months ago

I am in the same position, diagnosed just before Christmas with RRMS. I have been offered Mavenclad and Lemtrada and although my gut feeling was to go with Lemtrada, I am not sure now. Thank you Milliepipkins for sharing your experience, it is good to get some feedback from someone!

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