Is anyone taking Lemtrada? What has been your experience with it and what type of MS do you have?
Lemtrada: Is anyone taking Lemtrada? What... - My MSAA Community
Lemtrada
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I am on Ocrevus but my second opinion neurologist did say that Lemtrada was going to "solve all my problems." I did not go that route because of side effect of death. I have progressive MS.
I took Lemtrada two times (five days and then three days) in 2015/2016. No adverse effects except a UTI (a possible side-effect with Lemtrada) - although it may be MS not allowing my bladder to fully empty. My MRIs show no new lesions. MRIs check to see if I need another Lemtrada infusion. I have a diagnosis of Relapsing Remiting MS.
I did Lemtrada on the same schedule as sashaming1 in 2015/16. The first six months I had serious dry mouth and had to brush often and visit the dentist often. No UTI. I was good until 2018 when had an exacerbation. After another exacerbation in 2019, decided to move onto Ocrevus and now Mayzent. Cannot seem to find a DMT that works for me. Originally diagnosed with relapsing remitting MS but feel I'm transitioning into primary progressive MS.
I am almost done with my 5 years of blood work after my treatment. It was the best thing I did for myself. I have RRMS. I had no side effects, day 5 I was tired and slept until the next day. There is so much more I can do now that I couldn't do before. I can get on the motorcycle again, walk up stairs without holding on and I can zip my pants again...no more pill ons YEAH. Good luck to you whatever you decide.