Last reply 10 months ago
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

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stumbler
11 months ago

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
11 months ago

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 😕


stumbler
11 months ago

@micheleg63 , they do say that some people require the second dose to get on top of the MS. It’s still early days from round 2. Hopefully, apart from the “steroid crash”, there hasn’t been any further deterioration.

Recovery from Lemtrada isn’t always that quick as it’s a lot of medication that goes into you. So I’d hope that you would start to recover going forward. Although, you still need to get your rest to allow this recovery to occur.

Stay strong and let your body do its thing.


micheleg63
11 months ago

Thank you @stumbler. I have everything crossed that you are right. My MRIs say one thing and my body does another. Summer in Brisbane doesn’t help. I do rest when I’m not superwoman on steroids. I guess Lemtrada is just a waiting game and I’m going to have to do a lot more waiting. Thank you again xx


noelie
10 months ago

@micheleg63 sorry to hear you’re not feeling great at the moment.

I have had lemtrada Oct 16 and Oct 17. The second round floored me, I still haven’t recovered from it, but I have to say that the relapses stopped completely after round 1, so that’s a big positive.

Have you seen a physio for your walking? The deterioration can just be muscle weakness, not the MS progressing. I’ve been told and can see how inactivity can bring disability. We need to use our muscles, there are specific exercises that can help, like the clamp, the bridge and knee extensions. Core strength is also very important.

I hope you get better soon xxx


krys
10 months ago

Hi @micheleg63
My story appears to be very similar to yours, diagnosed 2012, Lemtrada in July 2016 & July 2017. No new lesions on MRI but slowly I am getting worse. Both my MS nurse and neuro don’t really say anything about this. Trying my best to keep mobile, Hope things start to improve for both of us soon.


micheleg63
10 months ago

Thank you @noelie and @krys. It’s so good to hear from you but I’m not pleased that we are all in the same boat. I agree about the mobility for exercise but sometimes it’s so hard and I’ve had a few falls recently. I am praying this is our bodies slowly recovering from Lemtrada. I find it hard to compute that no lesions and no progression from the MRIs translates as increased disability. There’s a wonderful blog called Tripping on Air. It’s so well written and funny but such an uncomfortable read. I hope we all get better soon too. 💕💕💕


noelie
10 months ago

There is a delay between nerve damage and muscle loss. Nothing we can do about the nerve damage, but muscles can be worked on. A physio can assess the weaknesses and give a program to target the problem area, the exercises are not strenuous and mostly done seated to start with. It’s not easy, time constraint and fatigue get in the way, no miracle, the damage is done but there is some scope for improvement. Meds can only help so much, the rest is up to us. Most common walking issues are addressed on youtube, like foot drop, weak hip flexor and hyper extended knee. https://www.youtube.com/watch?time_continue=1&v=xrsV4ybwavc

thank you for mentioning Tripping on Air, i had a look, great read.

I’m nearly 3 months post Lem R2 and on a mission to regain as much mobility as i can, please join me 😀

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