@micheleg63 

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micheleg63

Progressing on Lemtrada

Hello everyone. I was diagnosed with MS at the end of 2014. And have tried betaferon and tysabri but due to being jc positive I began Lemtrada in September 2016 and had round 2 in September last year. Apart from a week about a month after round 1 in which I felt amazing (probably due to steroids) I have slowly but significantly gone backwards. My walking is terrible, I’ve mostly given up driving and am beginning to use a wheelchair inside so I can care for my children. I am mostly housebound. I have mentioned this to my neuro and MS nurse a number of times throughout treatment but finally my MS nurse replied hat he believed the treatment had not worked. I think I could have coped if my MS had stayed the same as it was before Lemtrada. Both the MRIs I’ve had since Lemtrada have shown no progression and one large lesion in my brain has gone. I will gather the strength up soon to contact my neuro and ask him if he believes Lemtrada hasn’t worked for me but has this happened to others and what did they do? I honestly can’t stop crying 😢 I live in Australia. Thank you for reading xxxx
@Stumbler

Hi @micheleg63 , I'm sorry that your MonSter is still giving cause for concern after two rounds of Lemtrada. Could I ask when this progression occurred? Was it between the 1st and 2nd rounds, or has it continued to deteriorate after round 2?

@micheleg63

Hello @stumbler the progression occurred between rounds 1 and 2. I did very well on tysabri, although I was only on it 5 months. From about a month after round 1 I began to get worse. Once the steroids wore off after round 2 I am staggering to walk and the numbness in my foot stops me driving. I find endone gives me a much needed boost from back pain and helps me with my mobility. I know it’s not a long term solution, pain clinic at the end of the month! My MS nurse could give me no answer for the deterioration and just said MS was crap 😕