I'm feeling good in my 3rd month home from HSCT for PPMS in Mexico though am dealing with mildly increased spasticity which will hopefully diminish along with a better outcome.. Still as a PPMS guy I will definitely be watching BTKI's
I took ocrevus for 3 years, currently on y1 of mavenclad, 62 years old, still mobile but struggling, very much interested in being in a trial for this drug.
@jonm4501 I really was going to try kessimpita, but it ended up being the same for me, I had several gastrointestinal issues really. I really had thought it was the m.s , until I stopped the DMTs.
@@jonm4501i was on ocrevus for 3 years too! I had a very severe neutripenia with it and almost died. I am on kesimpta now, it is also an anti CD 20 , but I inject myself and there is no premedication
I did a similar transition from Rituxan (ocrevus’ first cousin) to Lemtrada (IV infusion similar to Mavenclad) and really appreciate the link to the clinical trial. I switched therapies because I had a really bad attack while on Rituxan.
I hope we will see something revolutionary in this decade or maybe early next decade hopefully we will be able to halt ms and prevent disability progression
Thanks Dr. Beaber - I'm excited by the prospects of BTKIs. I've been on Ocrevus for over a year and hoping to switch to a BTKI for long term treatment. I recently read about ATA188 failing in phase 2 trials. Could you do a video explaining that study?
@@aleien302 Do you have a source on this? As far as I know, the phase 3 PERSEUS trial (tolebrutinib vs. placebo in progressive MS) is ongoing with no results available. I even have a patient in this trial.
@@aleien302 Evobrutinib was not superior to aubagio but did not necessarily "fail." Both groups in this randomized trial had low rates of relapses. Certainly, I do not expect BTKIs to be high efficacy in preventing relapses and new MRI lesions based on data so far.
Thank you for update on BTK-I. Do you have any interesting information or some thoughts on inverse vaccine for MS? It looks like there is some ongoing work on this topic.
Thank you ENORMOUSLY for your fantastic videos AND kudos to you for not having a paywall that would make them prohibitive to many (myself included). May I ask if you have any information about the lemtrada/alemtuzumab aspect of adding the BTKs to an already reconstituted immune system? I have had four rounds of lemtrada (most recently about a year ago) due to both old lesions “acting up” and new “things”, but no new lesions. Also, do you know of any clinical trials specifically involving people who had had lemtrada previously. I keep getting excluded from clinical trials because of my previous Lemtrada infusions. You are an example of how redheads are all rockstars (being one myself, I may be biased). Thank you in advance.
Can you explain a little bit more about about the cytokine receptors vis a vis the tysabri reference ? Would fenebrutinib be incompatible with tysabri?
Hi Brandon, I'm about to get onto a trial with Remibrutinib, I just wanted to make sure it's all BTK inhibitors (including this one) that's able to go across the blood brain barrier and in the CNS?
Remibrutinib is also in development for urticaria, so most articles are on this topic, but it is a small hydrophilic molecule which SHOULD have good CNS penetration. However, this study in rats showed low CNS penetration: www.ncbi.nlm.nih.gov/pmc/articles/PMC10463946/ "The compound levels in total brain homogenate are very low and mainly detectable at the early timepoint. Similar, but lower levels were detected in cerebrospinal fluid (CSF) and brain"
Thank you so much Dr Beaber@@DrBrandonBeaber. I skimmed the study (usually I'd read the whole article thoroughly but optic neuritis in both eyes is making it v difficult to read/type), it seemed to have fairly good efficacy at reducing microglial inflammation, I'd have thought that would be a brain inflammation lowering benefit even if low levels were detected in the CNS, what do you think?
So sad, I hope you are doing well though! I’m on phase 3 trial for Evobrunitib vs Aubagio, it’s been 58 weeks but I’m still on the double blind phase and still don’t know what I’m taking.
Have you ever heard of a symptom that gives sense of slipping/slippery on surfaces that are rough or not slick? My balance was also off when this occurred. 🙁
@@DrBrandonBeaber thank you so much for quick reply. I have been reading a bit today to understand what the root cause of such could be. What do you see as the most likely cause? Ataxia? Numbness? Reduced or hyper somaticsensory/haptic sensation/communication?
Natalie, I had this problem during my diagnosis time period, and sometimes during a relapse since diagnosis in 2008. My sympathies for this concerning issue. I DEFINITELY wear super gripping sock/slippers at home now, and only buy shoes that have a non slip bottom. After talking to my neurologist AND then seeing a physical therapist, they focused on balance exercises and improving my proprioception/kinesthesia, and making sure my muscle strength was equal on both sides (I had been overcompensating my right leg over left because of left leg weakness for YEARS). I am not giving advice or anything other than mentioning what helped for myself having the same foot-slip issues. Peace to you and your MS😊.
Excellent content doctor, as always ! Not very related to this video but I was wondering if you could do a video about health issues that could increase the chances of developing MS in the future. I've read somewhere that there are some conditions ( I think it was uveitis, optic neuritis and even trigeminal neuralgia but i'm not 100% sure) that one could have at some moment in time that could increase the chances of MS. Is this any true ? Can we establish a real causality ? What would these conditions be ? Thank you so much for your time !🙏
Hey Dr. B I've been reading about other dmts coming down the road with promising results. Is this happening because science is getting a better understanding on this complex disease?
hi doctor , really enjoyed your video , i have been recruited here in italy to join the trial for fenebrutinib vs aubagio (idk which i will get), i just wanted to ask , will the people that take fenebrutinib for the trial be able to keep taking the pill after the trial has ended (i think it was a two year trial)?
I am not sure to be honest, but many of these studies have an open label extension phase (where you take the study drug and know you are receiving it). If you ask the study contact, they should be able to tell you.
My concern with BTKs are I hope they dose them correctly. Like you said the other trials are once a day, which could potentially “fail” not sure why they don’t increase dose to try and get a better result. Additionally if they pass phase 3/4 wonder what the process would be to switch to them from Tysabri or ocrevus.
Generally speaking, people strongly prefer once-a-day medications, so they are probably willing to take the risk of failure in order to go for a larger market share. For Ocrevus, there is no rebound effect, so switching is probably not a big deal. For Tysabri, we don't know if BTKIs would prevent rebound.
evobrutinib failed hard.... but in an unfair way, bcz aubagion did way too good, i guess the people thought they would get BTK and did good bcz of that :D @@DrBrandonBeaber
Dear Dr. Beaber, I subscribed to your videos and always give you likes. I trust your scientific expertise and would like to know what you think about ATA188, which I lately discovered to be a new medicine valuable also for progressive forms of MS. Perhaps this could be a topic for a new video. Greetings from Germany, Björn Stolz
It should be noted that if you've been on a b cell depleter in the last two years, you are not eligible for the fenhance trial. Understandable but kind of a bummer.
I have been on this study for about a year now as of Jan 2024. So far the MRIs and all other data is hidden, but I take my own with my Neurologist and so far nothing new on the scans, liver function is going well. I take Fenebrutinib 2x daily and Aubagio 1x daily. Which one is the real drug, I’m not sure :)
When did I say I was so confident? In this video on ATA-188, I clearly say "This is just in phase 1. We don't know if this is actually going to work or not" at 12:30 th-cam.com/video/1ufzMFl8ykw/w-d-xo.html
![4 Common Foods that Make Multiple Sclerosis Worse [AVOID THIS]: Gut Health Expert](http://i.ytimg.com/vi/1yvbtpQUDzI/mqdefault.jpg)
I love the barage of technical info. Don't ever "dumb" it down. Thanks!
❤
Thanks so much Dr. Beaber. One of my MS buddies is in on of the trials. Fascinating stuff!
I will definitely do a follow up once the trials are completed and the data is available.
So many studies focus on brain lesions, I would LOVE to see more studies and info on spinal lesions only. We get oit of a lot of MS research.
❤
Thank you Dr. Beaber. I truly appreciate your deep investigation, explanation, and discussion.
I'm feeling good in my 3rd month home from HSCT for PPMS in Mexico though am dealing with mildly increased spasticity which will hopefully diminish along with a better outcome.. Still as a PPMS guy I will definitely be watching BTKI's
Hopefully you get improvement over time.
I hope i can participate in a phase 1 CAR-T Cell trial next year here in germany. I will talk to the Dr. in February.
I took ocrevus for 3 years, currently on y1 of mavenclad, 62 years old, still mobile but struggling, very much interested in being in a trial for this drug.
This is the link for the FENtrepid trial: clinicaltrials.gov/study/NCT04544449 If you scroll down, you can find the contact information.
@kathyford650 I'm on Ocrevus, about the same amount of time, may I ask why you discontinued it? Thanks!
@jonm4501 I really was going to try kessimpita, but it ended up being the same for me, I had several gastrointestinal issues really. I really had thought it was the m.s , until I stopped the DMTs.
@@jonm4501i was on ocrevus for 3 years too! I had a very severe neutripenia with it and almost died. I am on kesimpta now, it is also an anti CD 20 , but I inject myself and there is no premedication
I did a similar transition from Rituxan (ocrevus’ first cousin) to Lemtrada (IV infusion similar to Mavenclad) and really appreciate the link to the clinical trial. I switched therapies because I had a really bad attack while on Rituxan.
I hope we will see something revolutionary in this decade or maybe early next decade hopefully we will be able to halt ms and prevent disability progression
Good information, thank you for looking into this and keeping us updated.
#Sharingiscaring
Interesting video again. Thanks, looking forwards to more data from all these BTKi in clinical trials
I will do a follow up for sure
Any comments on the recent news on evobrutinib phase 3 results not meeting primary endpoint?
Thanks Dr. Beaber - I'm excited by the prospects of BTKIs. I've been on Ocrevus for over a year and hoping to switch to a BTKI for long term treatment. I recently read about ATA188 failing in phase 2 trials. Could you do a video explaining that study?
When the full data comes out for ATA-188, I may do a video on it. Unfortunately it's sometimes difficult to know why drugs don't work out.
Btk tolebrutinib has failed phase3. It is a good thing, stop reserching to slow down the desease, it is time for the next phase!
@@aleien302 Do you have a source on this? As far as I know, the phase 3 PERSEUS trial (tolebrutinib vs. placebo in progressive MS) is ongoing with no results available. I even have a patient in this trial.
@@DrBrandonBeaber Sorry 4 the mistake. It Is not Tolebrutinib but its "cousin" by Merck, evobrutinib.....same family BTK! I apologize....
@@aleien302 Evobrutinib was not superior to aubagio but did not necessarily "fail." Both groups in this randomized trial had low rates of relapses. Certainly, I do not expect BTKIs to be high efficacy in preventing relapses and new MRI lesions based on data so far.
Great video Dr. Beaber. I would just like to correct that the fenebrutinib dose, at least in the phase 3 RMS trials, is 200 mg twice a day
Thank you for update on BTK-I. Do you have any interesting information or some thoughts on inverse vaccine for MS? It looks like there is some ongoing work on this topic.
You may appreciate these two videos I made on the topic: 1) th-cam.com/video/ML700hPtJmI/w-d-xo.html 2) th-cam.com/video/j5JIlA2r1x8/w-d-xo.html
Thank you ENORMOUSLY for your fantastic videos AND kudos to you for not having a paywall that would make them prohibitive to many (myself included).
May I ask if you have any information about the lemtrada/alemtuzumab aspect of adding the BTKs to an already reconstituted immune system? I have had four rounds of lemtrada (most recently about a year ago) due to both old lesions “acting up” and new “things”, but no new lesions.
Also, do you know of any clinical trials specifically involving people who had had lemtrada previously. I keep getting excluded from clinical trials because of my previous Lemtrada infusions.
You are an example of how redheads are all rockstars (being one myself, I may be biased). Thank you in advance.
Can you explain a little bit more about about the cytokine receptors vis a vis the tysabri reference ? Would fenebrutinib be incompatible with tysabri?
The FENtrepid study is twice daily... 400 mg total per day
Thanks so much for the video!
:)
Hi Brandon, I'm about to get onto a trial with Remibrutinib, I just wanted to make sure it's all BTK inhibitors (including this one) that's able to go across the blood brain barrier and in the CNS?
Remibrutinib is also in development for urticaria, so most articles are on this topic, but it is a small hydrophilic molecule which SHOULD have good CNS penetration. However, this study in rats showed low CNS penetration: www.ncbi.nlm.nih.gov/pmc/articles/PMC10463946/ "The compound levels in total brain homogenate are very low and mainly detectable at the early timepoint. Similar, but lower levels were detected in cerebrospinal fluid (CSF) and brain"
Thank you so much Dr Beaber@@DrBrandonBeaber. I skimmed the study (usually I'd read the whole article thoroughly but optic neuritis in both eyes is making it v difficult to read/type), it seemed to have fairly good efficacy at reducing microglial inflammation, I'd have thought that would be a brain inflammation lowering benefit even if low levels were detected in the CNS, what do you think?
Good morning Dr Beaber
Thank you for providing information each week
I recently came across your site
Are we able to ask questions???
Sure, but I don't answer personal medical questions here, just general information.
I was supposed to join a study on Fenebrutinib vs Aubagio but in the end I didn't fit the requirements 😭😭😭😭
Because I had disease activity while previously using Aubagio 😞
So sad, I hope you are doing well though! I’m on phase 3 trial for Evobrunitib vs Aubagio, it’s been 58 weeks but I’m still on the double blind phase and still don’t know what I’m taking.
Salve in Italia non ci sono queste terapie?Grazie
I’m in the FENtrepid clinical trial.
neat. We will see how it goes.
Have you ever heard of a symptom that gives sense of slipping/slippery on surfaces that are rough or not slick? My balance was also off when this occurred. 🙁
I have had patients with a similar sensation.
@@DrBrandonBeaber thank you so much for quick reply. I have been reading a bit today to understand what the root cause of such could be. What do you see as the most likely cause? Ataxia? Numbness? Reduced or hyper somaticsensory/haptic sensation/communication?
Natalie, I had this problem during my diagnosis time period, and sometimes during a relapse since diagnosis in 2008. My sympathies for this concerning issue. I DEFINITELY wear super gripping sock/slippers at home now, and only buy shoes that have a non slip bottom. After talking to my neurologist AND then seeing a physical therapist, they focused on balance exercises and improving my proprioception/kinesthesia, and making sure my muscle strength was equal on both sides (I had been overcompensating my right leg over left because of left leg weakness for YEARS). I am not giving advice or anything other than mentioning what helped for myself having the same foot-slip issues. Peace to you and your MS😊.
Excellent content doctor, as always ! Not very related to this video but I was wondering if you could do a video about health issues that could increase the chances of developing MS in the future.
I've read somewhere that there are some conditions ( I think it was uveitis, optic neuritis and even trigeminal neuralgia but i'm not 100% sure) that one could have at some moment in time that could increase the chances of MS. Is this any true ? Can we establish a real causality ? What would these conditions be ?
Thank you so much for your time !🙏
Hey Dr. B I've been reading about other dmts coming down the road with promising results. Is this happening because science is getting a better understanding on this complex disease?
Maybe they’re trying to underplay the severity of symptoms in planned trials (hence once daily dose)?
hi doctor , really enjoyed your video , i have been recruited here in italy to join the trial for fenebrutinib vs aubagio (idk which i will get), i just wanted to ask , will the people that take fenebrutinib for the trial be able to keep taking the pill after the trial has ended (i think it was a two year trial)?
I am not sure to be honest, but many of these studies have an open label extension phase (where you take the study drug and know you are receiving it). If you ask the study contact, they should be able to tell you.
@@DrBrandonBeaber thanks for the answer doc , i hope it does since they told me i need to do a spinal tap aswell xd
Can you make a video about MS Octopus trial in UK?
My concern with BTKs are I hope they dose them correctly. Like you said the other trials are once a day, which could potentially “fail” not sure why they don’t increase dose to try and get a better result.
Additionally if they pass phase 3/4 wonder what the process would be to switch to them from Tysabri or ocrevus.
Generally speaking, people strongly prefer once-a-day medications, so they are probably willing to take the risk of failure in order to go for a larger market share. For Ocrevus, there is no rebound effect, so switching is probably not a big deal. For Tysabri, we don't know if BTKIs would prevent rebound.
Could you comment on any link possible or otherwise between ms and chronic urthicaria? I have ms but i did have chronic urticaria as a chid.
Do the other phase III trials of the other btks end earlier?
The PERSEUS trial (tolebrutinib) may end a little bit earlier.
@@DrBrandonBeaber
I read that Tolebrutinib is more potent and much faster-acting than Fenebrutinib.
@@demoskunk We will see if this is true down the road
evobrutinib failed hard.... but in an unfair way, bcz aubagion did way too good, i guess the people thought they would get BTK and did good bcz of that :D @@DrBrandonBeaber
Would you advice a young woman to larticipate in a clinical trial of remibrutinib?
Dear Dr. Beaber, I subscribed to your videos and always give you likes. I trust your scientific expertise and would like to know what you think about ATA188, which I lately discovered to be a new medicine valuable also for progressive forms of MS. Perhaps this could be a topic for a new video. Greetings from Germany, Björn Stolz
I have a video on ATA 188: th-cam.com/video/1ufzMFl8ykw/w-d-xo.html However, the clinical trial for ATA-188 has been stopped due to lack of efficacy
It should be noted that if you've been on a b cell depleter in the last two years, you are not eligible for the fenhance trial. Understandable but kind of a bummer.
This is unfortunate but I can understand they don't want to confound the data too much
I have been on this study for about a year now as of Jan 2024. So far the MRIs and all other data is hidden, but I take my own with my Neurologist and so far nothing new on the scans, liver function is going well. I take Fenebrutinib 2x daily and Aubagio 1x daily. Which one is the real drug, I’m not sure :)
Thanks you for contributing to our knowledge of multiple sclerosis. I look forward to the results of the study.
In breve di cisa di tratta?
What about ata188? You were so confident! What a delusion
When did I say I was so confident? In this video on ATA-188, I clearly say "This is just in phase 1. We don't know if this is actually going to work or not" at 12:30 th-cam.com/video/1ufzMFl8ykw/w-d-xo.html
can someone participate in BTK trials to this point?
What do you mean?
@@DrBrandonBeaber if I can still participate in fenebrutinib trials in Germany
god bless you