Hi Pam, thanks so much for this video. It is, of course, really of interest to me because I am now in the SPMS category with very slow but consistent disability progression. The only thing that does worry me, like you, is the liver enzyme toxicity levels it may bring. I like the idea of the other dark horse, Remibrutenib (if that’s how you spell it) as the liver enzymes don’t seem to be compromised, that’s very promising to see. Let’s cross fingers and toes that the dark horse gets out of the gate and goes to the front of the pack, if that’s the one which is safest and actually works. As always, thank you so much for all the work you do in investigating these new drugs, so we don’t have to. Take care, many thanks from Shelley in Australia 👏👍🥰
Hi Shelley! We think alike, once again. Having had hepatitis years ago, I know my liver is not at 100%, so I'm not inclined to try tolebrutinib. But remibrutinib might be worth a try. I'll look into it for a future video. Take care!🤓
The statement - ' it didn't meet the goal of it's primary end point ' meaning it didn't have the desired outcome . So does this mean if a 'trial'.by mistake actually found a cure ( or something near) could be abandoned (stopped) because it wasn't meeting or arriving at its desired destination ? I'm sure this has happened before !
Great question! I have wondered how those endpoints are established; is it a generally established method or is it up to the research team? I know that sometimes when an endpoint isn't met, the team digs in to find out why, and then another trial is launched. We'll see whether this happens with evobrutinib, for example.
Hey Pam! I love your videos; exceptionally informative! Btw, I have a neurologist appointment tomorrow and I’m gonna be asking what happened to break through the Tysabri and if I really do possibly have ANYTHING other than stem cells on the table for me as I’ve not heard anything from the professor in Sheffield, uk… I hope you remember the conversation we had a little while ago! Much love to you from the West Midlands, uk!
@@youandmeandmultiplescleros402 I’ll respond to this message when I’m back from my appointment (quite a few miles from my home!) thanks so much for chatting with me! It’s so appreciated! From one ms warrior to another! ❤️
Hi Pam! I do hope u r well!… went to neurologist and he’s very cross that I’ve not heard anything from the professor in Sheffield… he’s writing to him again… 🙄! He said stem cells will only do what Tysabri does and prevent relapses..?!? I’ve heard different! He doesn’t know why I had a breakthrough with my Tysabri…!!! Again 🙄 and he certainly doesn’t recommend Lemtrada… apparently it would merely be a side step away from Tysabri… 🤷🏻♀️ ummmm… apparently it comes with far too many risks… and stem cells do not?!? I beg to differ… he’s still pushing me to travel the many miles to Sheffield and ‘have a chat’ with this professor…! 🤬 and just stay on the Tysabri… if it ain’t working then why bother?!? also I reported that I have severe hyper extension of my knee so he’s referring me to physio therapy… GREAT! More poxy appointments!!! Grrr!!! I’ve had physio before and it just didn’t work… pointless waste of NHS money… but my mother in law will be happy; she thinks physio will all but cure ms…. It’s rubbish!!! Of course my husband is saying I’m to go with an open mind or it won’t work… duh! I had it before and it did NOTHING!!! So I’m very annoyed this evening! So there you have it; rubbish neuros in the uk!!!!
@@LabradorLady Thanks for letting me know what your doctor said. I was encouraged that he was at least annoyed that the professor hadn’t followed up with you. I’m dealing right now with a doctor (not a neurologist, thankfully) who seems content to leave me in a black hole, so I guess I’m more alert to that these days! I think I understand your doctor’s concern about your coming off Tysabri: there’s a “rebound effect” that’s commonly reported for those who’ve stopped Tysabri, even if they’ve switched to another DMT. It’s not fatal, but it’s not pleasant. As for stem cells, your doctor is right, in that the therapy might be able to reset your immune system and stop relapses, but it can’t fix the damage that’s already taken place. But if your doctor thinks you might be a good candidate for AHSCT, maybe it’s because he doesn’t think there are any other DMTs that will stop the relapses and prevent the rebound effect. Are you in relapsing or progressive MS, by the way? I looked up the UK Sheffield team (www.sheffield.ac.uk/neuroscience-institute/research/breakthroughs/pioneering-stem-cell-treatments-multiple-sclerosis-ms). Is it Dr. Sharruck you’d be seeing? All this by way of saying that stem cell treatment seems pretty drastic, but maybe it’s worth hearing a second opinion…bearing in mind that to the man with only a hammer, everything looks like a nail, if you catch my meaning. Oh, I do wish you the very best as you decide what to do next!🌷🏵🌹
Pam, I just discovered your very interesting site. Are you familiar with N-acetylglucosamine as a possible treatment for PPMS? It seems to have a lot of promise.
Hoping the trials for PPMS are good. Im 68 and hope to live a lot longer
I have high hopes for tolebrutinib. Like you, I'd like to be around for awhile yet!
Hi Pam, thanks so much for this video. It is, of course, really of interest to me because I am now in the SPMS category with very slow but consistent disability progression. The only thing that does worry me, like you, is the liver enzyme toxicity levels it may bring. I like the idea of the other dark horse, Remibrutenib (if that’s how you spell it) as the liver enzymes don’t seem to be compromised, that’s very promising to see. Let’s cross fingers and toes that the dark horse gets out of the gate and goes to the front of the pack, if that’s the one which is safest and actually works. As always, thank you so much for all the work you do in investigating these new drugs, so we don’t have to. Take care, many thanks from Shelley in Australia 👏👍🥰
Hi Shelley! We think alike, once again. Having had hepatitis years ago, I know my liver is not at 100%, so I'm not inclined to try tolebrutinib. But remibrutinib might be worth a try. I'll look into it for a future video. Take care!🤓
Interesting information, the possibility of making bad matters worse is concerning. At least they are trying.
Yes they are, Donna! It's encouraging to see all the investment in research.
Promising news, thank you! Btw. i never heared about Remibrutenib until this video. I am exited to hear more👍
I'll be looking into that and will let you know!
The statement - ' it didn't meet the goal of it's primary end point ' meaning it didn't have the desired outcome .
So does this mean if a 'trial'.by mistake actually found a cure ( or something near) could be abandoned (stopped)
because it wasn't meeting or arriving at its desired destination ?
I'm sure this has happened before !
Great question! I have wondered how those endpoints are established; is it a generally established method or is it up to the research team? I know that sometimes when an endpoint isn't met, the team digs in to find out why, and then another trial is launched. We'll see whether this happens with evobrutinib, for example.
Very good progress in MS-Science !
I agree!
Hello, Pam. Thank you so much.
You're welcome, as always!
❤ Gold bless you
I appreciate that. God bless you as well!
Hey Pam! I love your videos; exceptionally informative! Btw, I have a neurologist appointment tomorrow and I’m gonna be asking what happened to break through the Tysabri and if I really do possibly have ANYTHING other than stem cells on the table for me as I’ve not heard anything from the professor in Sheffield, uk… I hope you remember the conversation we had a little while ago! Much love to you from the West Midlands, uk!
Of course I remember you! I hope you'll let me know what your doctor says about what options you have. Don't let him/her put you off!
@@youandmeandmultiplescleros402 I’ll respond to this message when I’m back from my appointment (quite a few miles from my home!) thanks so much for chatting with me! It’s so appreciated! From one ms warrior to another! ❤️
@@LabradorLady Absolutely! I'm looking forward to learning how things went.
Hi Pam! I do hope u r well!… went to neurologist and he’s very cross that I’ve not heard anything from the professor in Sheffield… he’s writing to him again… 🙄! He said stem cells will only do what Tysabri does and prevent relapses..?!? I’ve heard different! He doesn’t know why I had a breakthrough with my Tysabri…!!! Again 🙄 and he certainly doesn’t recommend Lemtrada… apparently it would merely be a side step away from Tysabri… 🤷🏻♀️ ummmm… apparently it comes with far too many risks… and stem cells do not?!? I beg to differ… he’s still pushing me to travel the many miles to Sheffield and ‘have a chat’ with this professor…! 🤬 and just stay on the Tysabri… if it ain’t working then why bother?!? also I reported that I have severe hyper extension of my knee so he’s referring me to physio therapy… GREAT! More poxy appointments!!! Grrr!!! I’ve had physio before and it just didn’t work… pointless waste of NHS money… but my mother in law will be happy; she thinks physio will all but cure ms…. It’s rubbish!!! Of course my husband is saying I’m to go with an open mind or it won’t work… duh! I had it before and it did NOTHING!!! So I’m very annoyed this evening! So there you have it; rubbish neuros in the uk!!!!
@@LabradorLady Thanks for letting me know what your doctor said. I was encouraged that he was at least annoyed that the professor hadn’t followed up with you. I’m dealing right now with a doctor (not a neurologist, thankfully) who seems content to leave me in a black hole, so I guess I’m more alert to that these days! I think I understand your doctor’s concern about your coming off Tysabri: there’s a “rebound effect” that’s commonly reported for those who’ve stopped Tysabri, even if they’ve switched to another DMT. It’s not fatal, but it’s not pleasant. As for stem cells, your doctor is right, in that the therapy might be able to reset your immune system and stop relapses, but it can’t fix the damage that’s already taken place. But if your doctor thinks you might be a good candidate for AHSCT, maybe it’s because he doesn’t think there are any other DMTs that will stop the relapses and prevent the rebound effect. Are you in relapsing or progressive MS, by the way? I looked up the UK Sheffield team (www.sheffield.ac.uk/neuroscience-institute/research/breakthroughs/pioneering-stem-cell-treatments-multiple-sclerosis-ms). Is it Dr. Sharruck you’d be seeing? All this by way of saying that stem cell treatment seems pretty drastic, but maybe it’s worth hearing a second opinion…bearing in mind that to the man with only a hammer, everything looks like a nail, if you catch my meaning. Oh, I do wish you the very best as you decide what to do next!🌷🏵🌹
Are there any other interesting clinical trials readouts this year? Thanks for the content.
I appreciate that. Quite a bit was showcased at ECTRIMS this year. I'll be looking into it for future videos.
Pam, I just discovered your very interesting site. Are you familiar with N-acetylglucosamine as a possible treatment for PPMS? It seems to have a lot of promise.
Interesting! I wonder if others besides University of California, Irvine are looking at this. I'll check it out!
Any idea when can it come to market
Sometime next year, maybe, if all goes well and they get the liver issue under control!