Why aren’t DMTs offered early after diagnosis?

In this video Robby interviews Dr Raj Kapoor who is a Consultant Neurologist. The interview was filmed by Varsha

Video transcript

Robby: What I learnt as a patient that you’re offered drugs after damage is done, which is after the horse has bolted from the stable, so that seems pointless. So now I think, like for Tysabri, that worked really well for me, decreased the frequency of relapses and severity by 70%. Right, do you offer these drugs before the…

Dr Raj Kapoor, Consultant Neurologist: Yeah. So this is a very difficult point. We are not allowed to offer some of these drugs early, and the reason being that they’re classified as being second line.

Robby: What does that mean?

Dr Raj Kapoor: Well, Tysabri’s an interesting point actually, because we do use it in people who come along with very severe, you know, sort of rapidly evolving severe MS. Most people don’t have that. They have gentle relapses where damage is building up underneath and so we use drugs which are safe, called first line, and they tend to be the ones which are weaker. So one question which we’re having to confront really is, should we be giving perhaps a little bit more dangerous drugs early on which are much more powerful. And that’s a difficult conversation because when you talk to somebody who’s actually looking and feeling perfectly well, and you say, well this drug’s got bad side effects, but actually it’s got a good chance of, you know, stabilising you, that’s a tough conversation.

Robby: Sure. I mean I sort of had my first attack when I was 19 and it was benign up until 37, so is it worth, I mean if you’d prescribed it early maybe I was going to take a drug that I didn’t need for 20 years.

Dr Raj Kapoor: Well, maybe underneath things were brewing, you know, and so what we’ve got to find out is how do you tell. And, you know, we talked a bit earlier on about 50 ways that MS can affect somebody and how do you get a drug for 50 different things, and the task we’ve got, you know, we’re talking about 20 year horizons, you know, at the moment, is personalising. We’ve got to work out for every person what’s happening to them and what’s the drug for them.

Robby: Sure. I think this is happening with medicine all over.

Dr Raj Kapoor: And we’re in there somewhere trying to work that out.

Robby: Actually, that’s such an excellent thing because you can’t really have general drugs rather than a targeted approach.

Dr Raj Kapoor: Well, we’ll go for, listen, we’ll go for general if they cure people, I mean I’m happy with that. But I totally agree that actually it would be far better to go to the next stage of medicine which is, for you, this is the one. At the moment when people say what drug shall I take, we can’t actually say what the pointers are in them to say this’ll be right for you or that’ll be right for you. It’s try it and see.

Robby: Sure. I mean how do you monitor patients realistically?

Dr Raj Kapoor: Well, there is a name for this, isn’t there, this whole thing about no disease activity, NEDA.

Robby: No, I’ve never heard of that.

Dr Raj Kapoor: Okay. So there is this concept that actually what you want is to stop the disease. Now, the idea is no relapses, no more disability, stable scan. And that’s being applied more and more, whether we use the term or not in practice. So, you know, when I see people in the clinic, the question really is, is the drug working. And we can go a bit deeper than just talking about relapses. I mean in fact for most people where the relapses have gone away for years and where they’re having no disability, nothing’s happening to them, then that’s as good as you want.

Robby: Sure. I mean you’re talking about management rather than halting the disease.

Dr Raj Kapoor: Well, the two may be the same. After all, if you’re somebody with MS where basically you are fine and where the drug you’re taking is agreeing with you, that’s as good as halting.

Robby: Really?

Dr Raj Kapoor: As long as nothing’s happening. I mean if you look deep down you may see in the scan the odd spot appearing or whatever. Now the question is, does that matter, will the brain heal from that, what’s the level that you want to control things at. But you’re asking really deep questions here, you know. I’d love to know the answers.

Robby: No, sure, I think any patient would say something’s better than nothing.

Dr Raj Kapoor: Yes.

Robby: That’s it.

Dr Raj Kapoor: Oh, okay. Thank you.

Robby: Thank you.

Dr Raj Kapoor: Thanks for letting me speak.

Dr Raj Kapoor: Robby: Thank you for your time.

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