Hi all, just newly diagnosed and it’s now time to choose a DMT. I have been offered 1st line treatments ie oral tablet . However after days and days of reading I have read that tysabri is more effective and recommended for high risk lesions, which I have in my brain stem. I have been told that this will probably be refused and they would rather wait to see if 1st line treatment fails. I’m not sure I’m happy waiting on a fail to get treatment that’s recommended for my lesion. Has anyone had any experience of trying to ‘fight’ for what you believe is best, or would it be that the consultant knows best ? I’m in Scotland if that changes the situation.
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I have no personal experience of this. But if I had been more assertive and set out my case sooner to switch up to Tysabri when the Avonex was obviously failing, I would’ve saved myself quite a lot of permanent disability. So I get where you’re coming from.
It’s up to you to make your pitch. And once the neurologist knows what you want, knows your reasoning and knows you understand the higher efficacy comes with higher risk, then it’s going to be done to a combination of things including luck.
By that I mean prescribing guidelines, budgets, local limitations on how much scope neurologists have to go beyond them etc etc. it’s a lottery in other words but things might go your way and if you don’t try, you’ll never know. Good luck with it all.
I’m not familiar with the oral disease modifying treatments but understand that the latest ones are pretty/ very effective. Which one have you been offered?
At the very least, even if you don’t win the battle the first time round. Then you’re in a very good position if whatever they do put you on isn’t doing the trick for you.
It’s called ‘joint decision-making’, but at the end of the day what you’re offered is the neurologist’s decision not yours. But you can really really help them to help you by reassuring them that you understand what’s going on and what the risks and benefits are.
My first neurologist dismissed my brain stem lesion. That’s why I changed neurologist, after my first appointment was offered treatment, but he wanted to hold off until he’d seen my MRI. I was offered a high efficiency DMT because of the brain stem lesion, and the amount of relapses I’d had. I chose kesimpta, as really didn’t want to have spend loads of time in the hospital after being in there nearly a month with my first relapse and diagnosis. I hope this helps. I’m sorry you’re going through this. I found PALS very helpful, and I also used the nice guidelines.
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What oral dmt were you offered?
I believe mavenclad is now being offered as a first line dmt
I like you was not happy with the dmt I was first offered (tecfidera)
However if it had been mavenclad I might have been happy as it has a mid to high efficiency and is a lot less invasive with regards to having to attend hospital appointments
I was just watching a YouTube vid were it was being said any other disease (cancer/diabetes) etc you take what the hcp recommends will work best it seems only with ms this doesn’t happen for some reason
I’d recommend getting all the evidence together to fight your case and emailing you neurologist
Good luck
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Thanks for the info.
I have a letter already drafted, pleading my case, if the answer is no on Wednesday. The nurse said she will put my case forward with my concerns, but we could only wait and see what he decides.
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It’s the permanent disability that’s obviously the worry. I have been going downhill more in the last few months especially my mobility.
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Been offered tecfidera and something starting with v I think. I’d be happy to try anything if it wasn’t for this brain stem lesion. This is new and this one gives me the fear so I’d rather attack it full on rather than see what happens
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I really hope you get the right answers on Wednesday! 
for you .
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I understand fully and would be doing the same as you in asking for the most effective ones ( check out Professor Gavin Giovanonni who argues for ‘inverting the pyramid’ I.e attack the MS early and with the most effective treatments.
So thought I’d update …. Unfortunately they won’t start me on tysarbi and have said they will prescribe tecfedera as a first line treatment. I have my next MRI in 3 months when they said that if there are changes then We can revisit the options
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Im sorry to hear this. I was offered tecfedera, but the neurologist wanted to see my MRI first that’s when he changed the medication offered due to my brain stem lesion . Sometimes you have to be pushy to get what you want! for you.
Well done asking the question. I’m sorry you didn’t get the answer you wanted. I hope you do very well on that DMD.
That’s a shame but Tecfidera is still a pretty effective treatment. Really hope it works for you
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For what it’s worth, I did ok for some years on a much less effective DMD than yours and my ms was pretty active.
Tecfedera should be winging its way in the mail to me within the next week or so. I’ll drop an update on how it went when I get my next MRI. Thank you all for your comments and your positivity about Tecfedera x
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