Hi - has anyone heard of or been lucky enough to have been offered MS treatment of BTKI Inhibitors?
I’ve just had a chat with my MS Nurse who said that the trials for this treatment are complete and are awaiting approval…sounds exciting as they may prevent the progression of further lesions….! Wow, wouldn’t that be something..
I haven’t at the moment @lajuice2424 but I’ll let you know later! Just arrived at a ms society event I’ve been invited too. Think that there’s supposed to be various presentations and talks this afternoon. Maybe this BTKI Inhibitors will come up. Or they’ll be a chance to ask someone.
@Freshairman oh yes….keep me posted!
@lajuice2424 can I ask what type of ms you have? I’ve got rrms myself. Because this new treatment is not going to be for everyone! When are these new drugs?
I also have rrms..when were you diagnosed?
How did the meeting go?
This treatment apparently is suitable for rrms as it slows any further progression - it all sounds too good to be true!
@lajuice2424 and that’s the people it’s being targeted at. Us rrms sufferers. Mind you I’m not on anything anyway. When I was first diagnosed it wasn’t routine to offer DMD as it seems to be nowadays. And eventually they’re not going to offer you them when we become too old! As unfair as that is. Yes, that’s precisely what it’s supposed to do. 21 years of being diagnosed with ms now. Although my first symptom was 11 years before that. But, nothing happened for a while..ten years awhile! Yes, it was very interesting. Scientists and DRS from Addenbrookes hospital there explaining what work they’re doing into ms research and finding ways to stop ms.. or stopping it’s progression. They’re looking for volunteers for their research programmes. If you’re interested and obviously can get to Addenbrookes regularly that is.
@Freshairman Thanks for your feedback - mmmm…interesting.
Erm no Addenbrookes is way too far to consider unfortunately, but I remain keen as always to look at alternatives and pursue the BTKI Inhibitor journey.
Like you, I’m not on anything for my MS. I regimentally take VitaminD3 (3 capsules a day), vitamin B and B12 and quercetin. I was offered fampridine a year ago but declined it on the basis of its potential side effects which may have included seizures…not good, especially as I need to drive. So I’ve stuck with my trusty FES device - far less invasive and no side effects..
Keep in touch - it’s good to talk!
How interesting. I’ve just looked on the main part of this MS Soc site and found what they have to say. It’s always good to know that they’re working hard on better options.
I was on a ph3 clinical trial for one of the -brutinibs but unfortunately it caused a spike in liver toxicity so I was pulled out after 4 months. A shame, because it was effective but not much use fixing the MS if I didn’t have a liver…
The BTKi’s are being lined up as replacements for the Anti-CD20’s such as Ocrelizumab. It’s more targeted rather than going after all B-cells.
There’s a fifth BTKi coming through called Remibrutinib which is claiming to have less side-effects. The other meds will go to market with liver function testing as part of the procedure.
Indications are that RRMS ph3 trials are concluding Q4’25 for all of the global big pharma trials and PPMS trial for Fenebrutinib Q1’26. Don’t know how long after that results get published and then of course, NICE/NHS would need to adopt it. I’d say 2027 at earliest for rollout of the BTKi’s as an alternative to the anti-CD20’s. Expect a major bunfight between the pharmas as they jockey for position and pick holes in each other’s results.
Useful technical article here: Updates in BTKi for MS
Really interesting- thank you. I’m really sorry you had to be pulled off the trial.
@GCCK Thank you for this insight and information.
Where are you in terms of your diagnosis and treatment now? (If you don’t mind sharing?)
Hello
The UAE, is the first and only countrie in the world where the Btki inhibitors (Tolebrutinib) are accepted but it’s very récent. This drug is for Spms.
I’m in France, and the laws for approbation are very very very long…
Good lucks for you in UK, perhaps you will have this DMT before us.
Bye.
Druggie13
@lajuice2424 I’m male, 63, PPMS, diagnosed 2021 but previously misdiagnosed with lumbar spinal stenosis. MS took hold in 2016 with some incidents back to 2012. Was EDSS 6.0 in 2021 and 6.5 at start of 2025. Walking / standing getting harder and increasingly reliant on power chair.
I was on the upper reaches of acceptance onto trial in 2023, now with 6.5 rating and 3 years older, probably wouldn’t get considered for most trials.
Graeme