That is exactly what I need. I’ve switched Consultant for various reasons and am seeing the new one next week. He also has private practice which of course doesn’t require NICE approval to prescribe...so wish me luck!
Yes I’m in the UK. I was initially treated by the Royal London and Prof Giovannoni, but have since relocated to the SW. I’m seeing the new chap on Thursday 30th and will let you know the outcome.
I’m under Gloucestershire. They’ve been really helpful. No complaints. The neurologist is snowed under. I think earlier diagnosis and more treatments. It’s a different experience now, since about a decade ago, his work low is heavy. I have an nhs appointment in may and an mri in July. So I’ll raise this with him then.
I saw the new chap on Thursday. Interesting discussion and has arranged an MRI for next week...in itself fairly astonishing. Very swift and this is as a NHS patient, so far. Once he has the results as a sort of baseline for him, we’ll discuss the options going forward. So far so good...and I’m 68 fyi. I’ll update you as and when :)
I haven’t actually had any luck so far. Have had the head MRI and am still waiting for his response regarding the results. There is a fairly new NHS available DMT for SPMS or Smouldering MS, from Prof Giovannoni which I’ve forwarded to the new chap as a prompt...I’ll let you know how that goes.
Hi Sally. Many thanks for the update. I saw the Neuro a few weeks back and he is going to scan brain and cervical spine. I’ve had a left hand arm tremor for a while that’s got more obvious. I know years ago there were pale lesions around c3-5. I know they can be hard to spot so I’m not that hopeful on an explanation. He keeps mentioning Simponimod. I can’t take as it’s close to Gilenya which has caused liver function probs. High GGT.
Prof G - just wondering how could Tolebrutinib move the needle in a positive direction much more than fenebrutinib if what you stated in your previous post turns out to be correct? I quote you here: "My interpretation of the data is that fenebrutinib behaves similarly to an anti-CD20 therapy. I would need to see more biomarker data to be convinced it is having an effect on smouldering MS beyond what we see with the class of anti-CD20 therapies."
Any idea when the MHRA will make a decision? Does the NICE assessment only start once the MHRA have made a decision? I’m seeing my neuro in December, what are the odds of him prescribing me tolebrutinib?
This is very exciting , awaiting further progress on this as a treatment for PPMS. Also hoping Fenebrutinib turns out to be the next better drug for SPMS and PPMS.
Fantastic news but not a done deal yet. Lets hope it doesn't sit in the 'in tray' of MHRA and NICE for too long and both give it the nod of approval. Many thanks for keeping us in the loop
That’s fantastic news, I’ll be lobbying hard for MHRA and NICE approval.
How amazing! And brilliant that you could break this news so quickly - thank you!
That is exactly what I need. I’ve switched Consultant for various reasons and am seeing the new one next week. He also has private practice which of course doesn’t require NICE approval to prescribe...so wish me luck!
Can you update. R u UK. ? I’d def go down private route. At nearly 65 time really is becoming brain.
Yes I’m in the UK. I was initially treated by the Royal London and Prof Giovannoni, but have since relocated to the SW. I’m seeing the new chap on Thursday 30th and will let you know the outcome.
I’m under Gloucestershire. They’ve been really helpful. No complaints. The neurologist is snowed under. I think earlier diagnosis and more treatments. It’s a different experience now, since about a decade ago, his work low is heavy. I have an nhs appointment in may and an mri in July. So I’ll raise this with him then.
I saw the new chap on Thursday. Interesting discussion and has arranged an MRI for next week...in itself fairly astonishing. Very swift and this is as a NHS patient, so far. Once he has the results as a sort of baseline for him, we’ll discuss the options going forward. So far so good...and I’m 68 fyi. I’ll update you as and when :)
Sounds like a potentially successful appointment 🤞
I haven’t actually had any luck so far. Have had the head MRI and am still waiting for his response regarding the results. There is a fairly new NHS available DMT for SPMS or Smouldering MS, from Prof Giovannoni which I’ve forwarded to the new chap as a prompt...I’ll let you know how that goes.
Tolebrutinib is not yet available in most countries.
Hi Sally. Many thanks for the update. I saw the Neuro a few weeks back and he is going to scan brain and cervical spine. I’ve had a left hand arm tremor for a while that’s got more obvious. I know years ago there were pale lesions around c3-5. I know they can be hard to spot so I’m not that hopeful on an explanation. He keeps mentioning Simponimod. I can’t take as it’s close to Gilenya which has caused liver function probs. High GGT.
Prof G - just wondering how could Tolebrutinib move the needle in a positive direction much more than fenebrutinib if what you stated in your previous post turns out to be correct? I quote you here: "My interpretation of the data is that fenebrutinib behaves similarly to an anti-CD20 therapy. I would need to see more biomarker data to be convinced it is having an effect on smouldering MS beyond what we see with the class of anti-CD20 therapies."
Good news. That was unexpectedly speedy. Presumably NICE will need arguing with a while yet
Any idea when the MHRA will make a decision? Does the NICE assessment only start once the MHRA have made a decision? I’m seeing my neuro in December, what are the odds of him prescribing me tolebrutinib?
Very heartened to see this
Would be supportive
This is very exciting , awaiting further progress on this as a treatment for PPMS. Also hoping Fenebrutinib turns out to be the next better drug for SPMS and PPMS.
Fantastic news but not a done deal yet. Lets hope it doesn't sit in the 'in tray' of MHRA and NICE for too long and both give it the nod of approval. Many thanks for keeping us in the loop
What is the UK position on Tolebrutinib and drug-induced liver injury (DILI)?
Thanks for sharing this fab news so promptly! Here’s hoping approval is as prompt here at home in the UK 🙏🤞🙏
Fabulous news, I'm so pleased!