lhroxy 25/03/17
Last reply 10 months ago
Lemtrada failure

My daughter developed slowly spreading numbness over her entire body four months after the first round of Lemtrada. An MRI scan showed four new lesions, two of them large. Her neurologist has told her that the Lemtrada is not working and she now suggests stem cell treatment. She is reluctant to go down this route as it will leave her infertile. Has anyone any experience of anything similar?

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lilbird
11 months ago

I’m so sorry to hear this @ihroxy!

I’m currently waiting for Lem r2 which has been delayed due to infection. So far (fingers crossed) I seem to be doing well with it. Do the drs think that r2 wouldn’t improve the situation? I was under the impression that the treatment wasn’t really “completed” till r2 was finished so I would have (perhaps naively) assumed you would need both rounds before making this kind of decision.

Is it possible to get a second opinion? I’m aware from all my reading online of a number of people who have needed a third round of Lemtrada because of disease activity after r2 so by this logic surely it’s too early to tell?

Sorry I’m not able to answer your actual question this turned out to be basically me venting some confusion & frustration on your behalf. Hopefully someone will be along soon to offer something more constructive. In the mean time much love & virtual hugs to you & your daughter ☺


sigmadelta
10 months ago

I wasn’t aware, as I am sure nor are many others, that stem cell treatment was available in the UK, outside of selected patients for trials.
I know it is available privately in the US, at an immense cost.
Is your neurologist suggesting this?


mmhhpp
10 months ago

If stem cell has been offered here in uk by an nhs hospital i would take it!!!! Do it before it is too late. I am not elegible anymore. I wish i would have done it!!

All current drugs have limited time of effectiveness and none stop you from rrms to spms.

Stem cell is the most promising treatment for rrms in my opinion.

Time flies in my case after only 4 years i went really down. …….


clare80
10 months ago

Hi @Ihroxy, sorry to hear your daughter has not had the results she hoped for after round 1 of lemtrada. I had round 1 in Cambridge in August 2016 and am lucky enough to be cared for by the neuro team who came up with lemtrada and did the clinical trials, so they have loads of experience. My MS nurse told me recently that a relapse after round 1 is not unusual, because you need two rounds. She said that the final outcome after two rounds does not seem to be any different between people who did and did not relapse after round one. Prof Coles has said the time to assess if it is working is 6 months after round 2, not after round 1. So for the question about whether the lemtrada is working or not and whether she should stick with it or abort after one round, I would seek a second opinion. Regarding stem cell treatment, I think they would not suggest this lightly so she should also try and get a clearer understanding of why it is being suggested and when and where that might work. She really just needs some more information so she can make an informed decision. Good luck!


lhroxy
10 months ago

Hi Clare80, thank you for your helpful reply I would like an opinion from Prof Coles re my daughter continuing on lemtrada and perhaps having the second dose earlier than originally planned. Do you have contact details either for him or the MS nurse who you spoke to? I could then perhaps arrange a second opinion from him. Thank you!

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