Last reply 2 months ago
Switching DMT during Lockdown in the UK

Hi

I was diagnosed with remitting relapsing MS in Dec 2019. 12 lesions but “only” sensory temperature and numbness symptoms in my left leg and left hand. I was lined up for another MRI and lumber puncture 3 months later. The lumber puncture results showed no signs of MS inflammatory markers, the MRI showed a new lesion and an active old one. I had MS. I was consulted about what treatment to start on and was offered Tecfidera or Ocrevus. I asked the neurologist what one he would start if he was me and he said Ocrevus as studies seem to show it’s better to hit MS hard early on for better long term outcomes. I agreed and I was in the waiting list and then Covid-19 changed the world. I was subsequently told no one was to start on Ocrevus because it would put me at higher risk with the world as it is now. So to my disappointment I then had to start Tecfidera instead. I’m grateful to have anything but I’ve read of more positive results from Ocrevus. There may be an opportunity in the future to switch from Tecfidera when things go back to “normal”. My question is has anyone else made the switch from Tecfidera to Ocrevus and seen much better disease delay?
Thanks

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ginnyborth
2 months ago

Hi. I was diagnosed with RR MS in Jan 2016 and started tecfedera 3 months later. I had initial nausea and diarrhoea for about a month, then settled fine. I had annual MRI scans which showed no new or active lesions. But, the tecfedera damaged my blood cells and became too risky so I (reluctantly at that time) had to cease taking it and moved to ocrevus 20 months ago. Again, the 2 MRIs since have shown no new or active lesions, but of course my next treatment has been postponed indefinitely. So, all in all, I would say its a good thing to start tecfedera if you can. Ocrevus is very new (it only became licensed in 2018 I think) and as far as I know tecfedera also has very good results. In my view, the important thing is to get started on an available treatment as soon as possible. I had symptoms similar to yours and they have not got any worse. In fact, I also take gabapentin which seems to have reduced the sensory issues. Hope this helps and all the best.


marcobett
2 months ago

@ginnyborth thanks for sharing your experience with both DMTs. I will stick to the Tecfidera for now as that’s all I have until the NHS can set up again for Ocrevus but if I’m offered it I think I will make the switch. Good to hear you’ve had no new lesions and wishing you continued success.


vixen
2 months ago

Hi @marcobett, I’ve ben on Tec for 3 years, no new lesions. 3 years ago, Ocrevus wasn’t even available in the UK. Tecfidera rates highly in terms of efficacy. However, I do believe that it has a short-lasting effect, ie, 2 tablets per day to keep it going. So I imagine the period of transition wouldn’t be too lengthy between the DMDs. The conundrum of DMDs is that there’s no way to measure how well it’s working. For example, my three years with no new lesions; who’s to say that if I hadn’t had a DMD, that I still wouldn’t have had no new lesions? All we do, is rely on scientific data and need to trust that. The bright side, is that 20 years ago, none of these were available, so we’ve come a long way. All the best 🙂

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