Pros and cons of not taking a DMT

Hello everyone,

I have been taking Tecfidera for just over 2 years now.
My latest MRI showed new activity and I had a couple of minor relapses during the 2 year period.

After the MRI my consultant and team decided the Tecfidera wasn’t probably working so they have offered me stronger DMT’s namely Tysabri or Ocrevus.

I have given Ocrevus as my choice after reading all about both and having my blood results back.

But while waiting I’ve had time to think about, whether or not should I try another drug?

What happens if I’m not on any DMT?

Do they have clear benefits which outweigh the side effects?

Anyone out there had any experience or would like to share their thoughts, I’d be glad to hear from you.

Thank you


My advice would be to look at the Barts MS Blog. Granted, none of the bloggers either have MS or have taken any of the DMTs but they are the leading experts in the field and have treated 1000s of patients over the years to witness the effects of the DMT v no DMT outcomes. There are no guarantees and different DMTs work better for different people. Some may be very well without any. However my view is that it is better to play the percentages and the evidence is that DMTs work better than none for the majority. I am on Ocrevus myself. I havent found it to be life changing, but i havent suffered any nasty side effects either. It does give me some hope / comfort that i am doing what i can to keep things in check and i think i would feel vulnerable without it. Just my opinion though. There are a couple of ocrevus facebook groups where again, the majority are happy to be on the treatment. May be worth checking them out. From what i have read, Tysabri is also lauded and given the choice i would probably have favoured that but it wasn’t an option and i am grateful to be on a high efficacy treatment relatively early in the disease course. Hope that is of some help and good luck with whichever path you choose.

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Mona, it is not nice to find that your MS has changed up a gear, and that your current DMD is no longer strong enough to protect you. I remember when that happened to me with Avonex, 10 years ago.

Perhaps one way to look at it is this: your MRI shows new MS activity, and you have been fortunate enough for those new lesions to be somewhere that hasn’t caused big trouble - you suddenly not to be able to walk, or see, or control your bladder or bowel, for instance. And hurrah for that, although there’s actually no such thing as brain damage that’s OK. It’s just that some places are worse than others. MS has made its intentions clear, and the next attack might not miss. So I would suggest that you pay careful attention to that message, and be glad that it was delivered with little harm done. . :

If you can make a smooth transition to a DMD that is strong enough to protect you from now on, that would be a great result. It’s a lot better than staying on a DMD that isn’t working any more and WAY better than leaving yourself at the mercy of uncontrolled MS, particularly as your MS has clearly shown that it’s active and up to no good…

Good luck.


p.s. I have had 10 peaceful years and Tysabri, by the way.

Hi Mona

I’ve been unlucky enough to have bad side effects from 4 different DMTs over the past 19 years. So for most of my almost 24 years with MS, I’ve had no protection from relapses.

For years that was OK, I had relapses, but with fairly mild effects and remission was generally pretty good. Then I had a real humdinger of a relapse in 2012 that landed me in hospital then rehab unit for 2 months. For several weeks I was unable to use my lower half at all, then came the day when I could wiggle a toe. I did have quite a lot of remission, but was from that point on, a wheelchair user, indoors as well as outside.

If I’d been able to take a decent disease modifying drug like Tysabri or Ocrevus since diagnosis, the chances are I wouldn’t be as disabled as I am today. At least, I’d have the chance of reducing disabling relapses.

So from my perspective, I’d take the Ocrevus or Tysabri. It might seem that it’s a heavy duty drug to balance against what, for you right now, have been minor relapses with good remission, but from my perspective a good DMD is an insurance policy.


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Hi Mona, so many people here do benefit from DMTs, but like SSsue…not always a good benefit for everyone.

Ive never been on any and dont fit the criteria now. But when I do read about the possible side effects, Im kind of glad.

But I am always glad to read when a DMT keeps someone in better health that they would otherwise be.


Can anyone point me in the direction of evidence that shows that DMDs delay onset of disability / SPMS and make it less severe ? Is there any evidence ? I’m not meaning to sound like I don’t think there is, I’m just being lazy and wondered if anyone had anything like that to hand?

There is plenty of evidence on the Barts Blog that the earlier you start a DMT, the better the outcome. I took this from page 32 of

“Further evidence that DMTs are most effective early in the disease course is provided by a recent meta-analysis of published randomized clinical trials in RRMS. This showed that DMTs are more effective at slowing disability progression from MS in younger people than in older people; they also reduce the relapse rate most effectively in younger people (rather than older people), in patients with low EDSS scores (rather than high scores) and in those with active lesions (i.e. lesions that are currently inflamed) rather than no active lesions.”

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Yes, I`m sure the evidence is there…so many people can agree with that and I am happy for them.


Thank you very much for sharing this ! I really appreciate it. I’ll give it a good read tonight!

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I’m quite new to this game and wondered if someone could explain to me why, if you have no new activity, is it considered the Tecfidera isn’t working? Surely no new activity is a good thing?

You`d think so wouldnt you?


But, Mona (the original poster) has new lesions on MRI and had relapses. So clearly the Tecfidera isn’t working as well as it might!

Otherwise, yes, if there’s no new activity, then a persons existing DMD is working so assuming no side effects are too dreadful, there would be no cause to change DMD.


Again thanks to all you great people. I have been thinking long and hard since speaking to my neurologist on Thursday and also speaking to you all on Thursday. I was looking at information on Tysabri and then happened on this chat and I have now deicided to go on the Tysabra. I will contact my neurologist on Monday and keep you all informed.

Much Love,Mary


It’s a great drug, Mary, and has been a blessing for me. I hate to think where I would be now without the peaceful decade that Tysabri has given me after the torrid years I had, when the Avonex had stopped working. I hope that you find that it suits you too.


Thank you so much Alison

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Hello to all, as I said I would let you all know when I got a start date for Tysabra. I start next Wednesday at 9. Fingers crossed. I’ll let you know how I get on.x

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