Forum

Is Lemtrada a cure?

Hello all,

Is Lemtrada a cure for MS? I mean, I know you have to go in every month for blood tests but that’s because of the side effects of the drug. In terms of the MS, you have two rounds and your done, possibly for life (correct me if I’m wrong here). That sounds like a cure to me.

I’m on Tysabri but I don’t actually see an end in sight, and if I stopped I’ll probably rebound.

And I assume this is the same with a lot, if not all, the other DMTs.

And why are people against calling it a cure?

I’m aware of the dangers of Lemtrada e.g. the risk of secondary autoimmune disorders which is why I decided against it, but in terms of the MS, it sounds like the closest thing to a cure to me.

Anyway, interested in hearing your thoughts.

Nora x

Nora, I really hope you’re for real, but there is no cure for MS, otherwise we would all be on Lemtrada?! DMDs can make life better, but they do not cure. If only!

1 Like

Yes, Nora, like Tracey says - there is no cure for MS (outside of a few snake oil salesmen that is).

Some DMDs work better than others, and hold the disease at bay for longer
There is no guarantee that any particular one will work well for you.
So if treatment “X” holds the disease at bay for ten years, but then progression starts again, X is not a cure.
A true cure would renew all the damaged myelin sheathing around the nerves, and stop any further deterioration.

Got it?

Geoff

I can’t read any more. …

have you been offered lemtrada?

tecfidera which i’m on has a very good relapse reduction rate of 50%.

lemtrada sounds amazing and my ms nurse reckons if i have to come off tecfidera i can try lemtrada.

discuss it with your neuro and ms nurse.

good luck

carole x

1 Like

I disagree with those who say Lemtrada is definitely not a cure. Noraxyz, I think the answer to your question is: nobody knows. Some people who are given Lemtrada early enough may never have any more problems from MS, and see problems they already had disappear. But, by definition, we will only know their MS never came back on the day they die.

Here’s a quote from a paper on Lemtrada (called alemtuzumab here) that suggests it might be a cure, for some people.

"Post hoc analyses showed that at year 3, 73% of patients treated with alemtuzumab 12 mg were free of clinical disease activity, defined as an absence of 6-month SAD and relapse, compared with 43% in the SC IFNB-1a group … [Coles et al. 2011]. More alemtuzumab-treated patients also experienced a sustained reduction in disability, defined as a ⩾1-point decrease in EDSS score sustained over a 6-month period in patients with baseline EDSS score ⩾2.0. "

The paper this quote came from is here if you want to check it out https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286943/

I don’t really think you can extrapolate a cure from the results yet, it really is a case of wait and see, the current DMTs just haven’t been around for long enough to say whether they are a cure or just a very effective treatment.

That’s why we’re not calling it a cure.

It’s a bit like cancer treatments - there isn’t a cure for cancer, but some treatments are very effective, and you’ll very probably die with the cancer, but not of it. But if you stop the treatment, the cancer is still there and could return. Lemtrada just hasn’t been available for long enough to see whether it really does stop MS “forever” or just for quite a long time.

Jo x

2 Likes

I was offered Lemtrada. It was between Lemtrada, Tysabri and Tecfidera when I was diagnosed. I decided to go with Tysabri.

My neuro has said I will move to Ocrevus if I become JC+ in about a year from now but even he doesn’t know if it’ll be licenced in the UK by then. Therefore, I will most likely go onto Tecfidera if I have to come off Tysabri. I have heard good things about Tecfidera from people on here and else where so wouldn’t be completely disappointed to have to come off Tysabri.

Nora x

Thanks, great article.

I was looking on the Barts MS Blog and they say on there “We propose using the term NEDA, or no evident disease-activity, at 15 years as a starting point for defining a cure. Why 15 years? This is the most commonly accepted time-point used for defining benign MS and therefore it is a usual end point.” There is currently data from a 10 year follow up study showing effectiveness of Lemtrada.

I think you’re right, along with JoH, we don’t know and it hasn’t been around or taken for long enough to be considered a cure or ‘NEDA’.

Nora x

The articles I talked about are: Multiple Sclerosis Research: NEDA: defining a cure

https://www.thepharmaletter.com/article/ten-year-follow-up-shows-efficacy-of-sanofi-s-ms-drug-lemtrada

Not a cure - although agree the “off and on again” approach is kind of a promising approach that could end up being a bit like a cure. I’m excited to be giving myself a shot with it anyhow!

I’m not sure that “repairs all previous damage” is necessary to call it a cure either? (Other illness causes permanent damage before being cured, I think.) I’d be satisfied with a cure that stops future attacks and lemtrada may be the closest thing to that currently available. Closest thing to a cure not the same as a cure though. :frowning:

Some DMD’s work better than others - why?

Because they each have a different mode of action - in other words, they do a different thing inside your body to reduce relapses and damage to your brain and spinal cord.

I agree. It seems to be wonderfully effective and, relative to the good it does, reasonably benign (although it is still early days for all the DMDs in terms of long-term impact.)

Perhaps because it is, as you say, ‘the closest thing to a cure’ and optimists decide to pay attention to the last word to the exclusion of the others? But would it matter much? It’s a great drug, whatever you want to call it, and surely that is the important thing.

Alison

4 Likes