Life after Lemtrada
I started Lemtrada June of 2018, completed May of 2019. It wasn’t an easy treatment. Ms for me began in 1995 (17 years old). Around 29 years of interferons…betaseron and then avonex. Then I stopped dmt’s and tried just diet…..bad idea.🤦🏼♂️. With my ms progressing and shouldering from RRMS to PPMS I did the Lemtrada treatment. It was difficult and I ended up with a cane afterwards. Two years after finishing the treatment my MRI showed no new or active lesions! But I’m still slowing down, my ms is still progressing…. I know I’m not alone in this, but has anyone else shared this kind of an experience?
Hey! My experience is similar to yours. I was diagnosed at 14 (2008) with RRMS. I first started on interferon injections for about a few years, before being switched to Gilenya (fingolimod). In 2017 I had my first lemtrada infusion. I also had a course in 2018 and 2021 (after more lesions were found). My MRIs also show no activity but after my last lemtrada infusion, I have also started using a walking stick, however I can still feel my body deteriorating :(
Yep the same, did lemtrada in 2017 and 18 it , slowed down my MS, then 5 years later it got worse again and now i use a cane too. Now SPMS or is it called progressive, the buzz word now. And lemtrada was tough I agree with you there, 5 years of bloods just became the norm.