Thank you Dr B, I’ve recently been diagnosed and the 1st sign of MS was Optic Neuritis. I pray 🙏🏽 everyday for my full vision to be restored in my right eye. Thank you for giving us all Hope. We need more Doctors like you in the world. ❤
My first attack was on the right eye as well. My vision and symptoms got gradually better over time but it took me pretty long, like maybe 1 to 1,5 years so don't lose hope and stay strong👍
My second relapse was Optic Neuritis in my right eye. I recovered very quickly but always felt I had some light sensitivity in that eye. This was probably ten years ago now. Earlier this year I was rejected from a remyelination trial because the doctor concluded my nerves had already remyelinated. And recently I realised I don't think I feel any light sensitivity now.
You may not be too old for the Frexalimab trial phase 3, there's 1 for RRMS and another for SPMS. I believe the age range is a bit higher on this trial. Frexalimab is an anti cd40 Ligand.
The amount of time and effort which went into this is truly mindboggling. I give the researchers (most of whom I did not mention in this video) full credit.
Wonderful news! Yesterday was my birthday, there couldn't have been a better gift than this news. Happy to see the real excitement in Dr Brandon's face at 12:23. I'm really optimistic about this.
Sharing this . The more trials the better- if they keep sciencing new technologies and theories- they’re bound to hit one that works. This one sounds and “ looks” interesting- the slides do show definite improvements in the models. Ty for exploring this for us.
Thank you for posting. I had optic neurotic in 2012 that gave me a diagnosis. I now use a rollator and have a lesion on my brain stem. I live in St Louis and emailed someone at Wash U about the study. It would be a miracle to regain some mobility. I have concrete hope.
Dr B i write you from Croatia And this is absolutely a Miracle!!! Huge huge step forward I have No problem to wait Bad things have already happen we have to just go forward thank you thank you so much
This could be a very useful add-on treatment. I'd love to participate in the trial but I'm in Europe - I don't think they have any test centres here. Even partial remyelination could be enough to alleviate the worst symptoms - a complete cure would be a miracle but even something that consistently resolved symptoms to a more manageable and stable state would be such a huge improvement on where we are right now.
Thanks a lot for sharing your knowledgments. I feel happier since I knew about the existence of Pipe 307. When do you expect you will have the conclusions of this study with patients? 30 weeks aprox.? Thanks a lot for your job and for providing a little bit of hope. Best.
Of course I am interested in participating in anything that might give me a chance for improvement!! However, I am 80 yrs. old, too old for any kind of help, I have a pacemaker which eliminates MRI’s. So I have missed the boat for any kind of help except for the 19 years I took Beta Seron and Avonex, very thankful for that help that I had!
I am ready to take the test. I am from Algeria. I want to say when the medicine will be available because we suffer a lot of fatigue because of this disease. God willing, this medicine will be available as soon as possible.
I started experimenting clamastine (tavegyl) my self (for 2 weeks now ) but only taking half of the dose they used in the study so taking (1,38mg x4 daily) (had tot buy it online because not available in France) I'm also taking a lot of different prescription medication (Gabapentine, Cymbalta, Tramadol for pain) I ll keep you informed on how it does help or not.
The full dose is required to have an effect. From experience, I tell you 3x2 (1.38 mg) + strenuous exercises. Unfortunately, they stopped producing Tavegyl and I can't find it anymore.
Be careful because Clemastine caused primary progressive patients to get worse in a recent trial, they had to halt the trial because of this. PIPE-307 being more targeted might be safer and more effective hopefully.
@@Peter-v2m Ari Green, who was not involved in the new study, said he is skeptical of the findings. "We can't conclude much about an effect based on three patients, and the risk that this is a chance effect is extraordinarily high," he said. "It's premature to make any attribution of what they saw to clemastine itself."
how about mixing clamastine and lions maine mushroom.. i was diagnosed in 2019 after i caught covid as they say..(new flu) my right eye went into my nose giving me mad double vision and walking like a was drunk...anyway had all test lumber punch etc etc. im a builder they told me a cant work anymore in the game i was goin mad saying to the docs dont tell me i cant work anymore. im a hard person inside and takes alot to beat me. but guess MS got me....i started on Tecfidera which didnt work after 9 months i had new MRI and had new liasons so they put me on Kesimpta Bang alot better now and no new liason im stable..but i make my own tumeric and ginger shots Vit D 5000iu aday vitmain B12 x 2 aday and lion maine mushroom capsules and eating loads of chicken fillets and Brocilli...good work Dr Brandon loving ur insights
Thanks again Dr Beaber for your exceedingly relevant and informative videos. I take 5mg of Clemastine(Tavegil) occasionally on Friday or Saturday nights so the anti-histamine effect does not interfere with my day job. It puts me to sleep a couple of hours after taking it. I've read the new PIPE-307 paper now and I'm further encouraged that the approach I have taken of pulsing the medication is likely to be increasing my rate of remyelination by a decent amount. I have my own pattern reversal VEP experiments for measuring latency changes. This is done via a Meta Quest headset and an OpenBCI Cyton EEG headset. I speculate that fasting may also help with replenishing OPCs. Please do a video on 'myelin water fraction imaging' :) thanks again!
Be careful because an MS trial for Clemastine was halted recently for making primary progressive patients worse. I stopped clemastine for this reason because I thought it wasn't worth the risk
@@Peter-v2m thanks for the advice, I’ll look further into these disparaging results before continuing to pulse the medication. I do have RRMS but it is still a worry. I may need to keep a closer eye on blood inflammation markers if I continue the experiment.
@ not sure if it is helping unfortunately. I got a prescription from my GP but had trouble sourcing it. I found it online at an allergist chemist in Europe without a prescription needed.
I would love to participate in the trial - but am not located near you. I am not on any DMT's. I would have taken Clemastine, but can't deal with the side-effects. 🙂
Thanks for the video! I understand how remyelinating agents would help with the repair of recently damaged axons, but would glial scarring and axonal degeneration not prevent effectiveness in older lesions?
What do I have to do to try PIPE-307? Where do I have to go? I am fed up of MS. Now I feel I am dead in life and this is not acceptable. There are only two ways, recover or death. But, for sure I am not interested in living the way I am doing now, suffering all the time and being a disturbance for all the people around me. So in Spain where could I try it? Or where do I have to go to try PIPE-307? Please give me information
I assume you mean as a complication of a TNF alpha blocking agent. That is unfortunate. Hopefully the phase II trial will be a success, but we will have to wait and see.
Dr B, Could you do a video about MS and "magic mushrooms" and what about the scar tissue left behind by the lesions? Like on the brain and spine. Thank you
That's really cool, thanks for posting that. A remyelinating drug would be awesome, I've gotten so used to the limitations from ON (healed most of the way) that I forget what seeing with good optic nerves is like (something happened to the other one too).
Exciting! I would love to be part of that clinical trial! I’ll have to look it up I wonder if this is successful if will be limited to only people with MS optic nerve issues .
I don't think so. The pathology in the optic nerve in MS is similar to in other areas of the nervous system. It's just easier to measure subtle changes in optic nerve function over short periods of time, so it's convenient for preliminary testing.
I wasnt diagnosed with MS but i got an autoimmune disease called ADEM (Acute Disseminated Encephalomyelitis) which damaged my myelin sheath and paralyzed my legs. So im praying this would be good for me too.
I don't have an ms diagnosis either, in my family we have several with CIDP and a few with FD, but I suspect it's not the founder gene. Anything associated with meyelin catches my attention. I do have a couple of relatives and friends with ms, so it doesn't hurt to keep an eye out for this stuff too!
Unfortunately, it is too early to determine this. My personal opinion is that all forms of multiple sclerosis share a similar underlying pathology, and the subtypes are not distinct diseases.
I am doing a Phase II-b clinical trial (Vista Pipe-307). I was diagnosed with RRMS about 8.5 years ago. My MS is relatively mild and not visible to others. I started taking tablets about 33 days ago. I suspect that I may be in the placebo group, as I don't experience any side effects and subjectively don't feel any improvement in my symptoms. However, it may be too early to tell. What do you think @DrBrandonBeaber?
Thank you Doctor, this is fascinating. Do you believe we could hope the remylenining effect would also works in NMO, specifically on the optic nerve lesions in NMO?
Potentially yes, though the pathology of NMO is very different with primary injury to the astrocytes , so it is possible it could be effective in MS but not in NMO.
Hi your videos are fantastic. My suggestion for a new video is vagus nerve stimulation. I have read some studies showing that this has a positive affect on MS. There are lot's of non invasive devices on the market now that could be helpful for people.
Hello doctor., My name is Gabriel Pérez I'm 33 years old from Argentina and I'm a person with MS diagnosed on 2015 And I want to know If I could participes on the clínica trial of Pipe 307 and How I can communicate with the investigators of this trial. I Like Your Channel and the way In which you Treat the sargent. Hope Everything is fine i wait your message back.
This is great news. Thanks for bringing it to our attention Dr Beaber. My right eye has optic nerve atrophy and I’m considered legally blind at 20/200, so I’m not sure how much this drug could help someone like me.
Obviously this type of drug would only help with demyelinated but not transected nerve fibers, but ideally it would help people even with fixed longstanding neurological disabilities.
@@DrBrandonBeaber How will be satisfied If I get back sense of Touch even in one finger There is hope and that is more then now I believe in your research as so many people
Thanks, Brandon. I haven't tried Clemastine but would be happy to trial pipe-307. Have you got any data on Clemastine and pipe-307 used together? Any data on metformin being used for remyelination? Omar Hayes
There is no data on clemastine and PIPE-307 used together to my knowledge. There is some data on metformin (not that impressive in my opinion). Perhaps this would be a topic of a future video.
I think I am not eligible for the clinical trial because of my age but I look forward to be able to try this drug if it gets approved and if I can afford it
I have issues with my vision but I want to sign up for the study! I became vissually impaired due to MS... well because I waited to long to get on medication. I have been good since then. anyway can I get into the study if I just turned 40? sorry for the bad typing...
Why are they doing RRMS? I know they need activity, but aren’t the RRMS people essentially stable now because of their DMEs? Desperation aside, my PPMS is always getting worse. I know it’s difficult to measure decline of progression of PPMS, but they’re measuring improvements.
Side note, I had a fascinating experience of improvement over this 29+ year journey. My left leg gradually weakened from the outset of my disease. It was essentially shot when my left leg started deteriorating 12 years later. My left leg then improved almost back to normalcy.
Hi drB and thank you, if this was to work, do you have any rough estimations of when this would be available on NHS in England and also do you it could it help reduce ‘pseudo relapses’?
I think if the currently recruiting phase II trial is a success, we will see a trial in progressive MS. These trials are extraordinarily expensive, so pharmaceutical companies want to see some preliminary success.
Another remyelinating agent (NervGen) has a two-pronged approach, if I understand correctly. There’s something to remove the dead/scarred stuff then the remyelinating trigger can do its work. What’s actually going on at a lesion site? Is it just missing myelin or is there a barrier of junk left in its place?
Please answer is Alexander disease and white matter disease and ms are same in recent my husband had mri they are telling brain looks white we taken mri for optic nerve is white
I really wanted to sign up for the trial but I take Ampyra and that’s exclusionary. I am following this closely, though. It’s more promising than most of the other stuff I’ve seen, but I’m trying not to be hopeful lol
Promising! I get so excited (and emotional) hearing about all of these studies and research. Potential remyelination will only work on axons that haven't been destroyed by the MS disease process, though. Probably lower expectation of these kinds of drugs working on those with advanced long standing MS. Too many of these axons have died off to be of much help.
I've had about 10 Optic neuritus, 5 bilateral, and left or right, my Optic Nerves have atrophied and all the Myelin is gone, legally Bling in one eye, my life is so hard vision and physically 😔🎗️👀
No one knows, if it has good results they can get a fast track, breakthrough therapy... What would I expect? Half year after finishing phase 2 to analyse data, prepare phase 3 trials, get the money + 2-3 years of phase 3 + another year to get FDA approved so I wouldn't expect to be available for the general public before 2029.
Reminds me of the very old drug Pentosan polysulfate and its use in slowing down the disease vCJD in patients. Sure it wasn't a miracle drug but it did improve symptoms and seemed to slow down the disease unfortunately lots of patients had to be taken off it because it was affecting LFTs to a serious degree.
@@DrBrandonBeaber yes I have MS. I have lumbar, puncture, bad headaches afterwards then had a blood patch and two days later I am in a wheelchair now I am essentially a paraplegic with only use of right hand, which is extremely weak. I am losing physical ability to speak. I was diagnosed with MS in 2021 after 25 years of military service. I am only in my mid-40s my doctor says MS is crazy and that’s the end of it. I have been getting Infusion and only getting worse over the last three years.
I am very interested to participate in clinical trial, but I live in Belgrade, Serbia, and I am 60 years old, I have been told that I am too old for clinical trial. But I have RRMS for 24 years and I am EDSS 4,5. Yes, if there will be any chance for Serbia to participate I know that many of US would do it, and I am for sure one. Thank you for the hope and support.
I only see sites within the united states right now, but you can check the clinicaltrials.gov site for updates: www.clinicaltrials.gov/study/NCT06083753?term=PIPE-307&rank=3
I am desperate, I am not afraid of dying, I am afraid of being a vegetable. This is not a quality life, I feel like I am dead in life. There are only two options, curation or death, being dead in life is not an option and now this is what it is like. Please contact me if you are looking for volunteers
@@DrBrandonBeaber The drug company website mentions a PIPE-791 in the pipeline. Links to mouse stuff. Wonder why it’s different. I’ve always thought PPMS is a separate disease but I would think remyelination would use the same agent. SCI too
![Multiple Sclerosis is Becoming Milder [Data Presented by Neurologist]](http://i.ytimg.com/vi/GlZdHnTFcwQ/mqdefault.jpg)
![Multiple Sclerosis is Becoming Milder [Data Presented by Neurologist]](/img/tr.png)
I'm praying everyday for something that will improve the disability from MS. Thanks for sharing this information.
Have you looked into melatonin and remylienation?
Hooray for oligodendrocytes! Thanks for sharing this exciting news Dr. Beaber.
:)
Thank you Dr B, I’ve recently been diagnosed and the 1st sign of MS was Optic Neuritis. I pray 🙏🏽 everyday for my full vision to be restored in my right eye. Thank you for giving us all Hope. We need more Doctors like you in the world. ❤
My first attack was on the right eye as well. My vision and symptoms got gradually better over time but it took me pretty long, like maybe 1 to 1,5 years so don't lose hope and stay strong👍
Hopefully you make a good recovery Daniel.
The same thing happened to me. 1.5 years ago
My second relapse was Optic Neuritis in my right eye. I recovered very quickly but always felt I had some light sensitivity in that eye. This was probably ten years ago now. Earlier this year I was rejected from a remyelination trial because the doctor concluded my nerves had already remyelinated. And recently I realised I don't think I feel any light sensitivity now.
Ps the trial was CCMR Two being run from the University of Cambridge, combining clemastine and metformin.
Thank you Dr Beaber for presenting us this news and giving us hope! It is highly appreciated 🌷
I'm glad to see interest in new research on drugs early in development.
This is exciting. I'm to old for the trials but will be at the front of the line for treatment when available.
Perhaps there will at some point be a phase II or III trial which includes older people with progressive MS.
You may not be too old for the Frexalimab trial phase 3, there's 1 for RRMS and another for SPMS. I believe the age range is a bit higher on this trial. Frexalimab is an anti cd40 Ligand.
@@user-xk3lj3sc5p Info on frexalimab in this video: th-cam.com/video/NUoJysffxwE/w-d-xo.html
Thanks Dr B! I was diagnosed in 2012 and walking with a cane and lots of fatigue. I used to race bicycles. This is hope. I really appreciate you!
You are not alone. I too am walking with a cane now and am exhausted all the time. I am 36M.
Research is amazing. Thank you to all the people that do this work.
The amount of time and effort which went into this is truly mindboggling. I give the researchers (most of whom I did not mention in this video) full credit.
Hi from Israel thanks dear doctor for this video it gives a hope
Wonderful news! Yesterday was my birthday, there couldn't have been a better gift than this news. Happy to see the real excitement in Dr Brandon's face at 12:23. I'm really optimistic about this.
Happy Birthday :)
Sounds promising, it will be interesting to see if helps neuroplasticity kick in a bit faster too. I would love to participate in a study…
Sharing this .
The more trials the better- if they keep sciencing new technologies and theories- they’re bound to hit one that works.
This one sounds and “ looks” interesting- the slides do show definite improvements in the models.
Ty for exploring this for us.
This is brilliant news that we have all been waiting for 🙏
My ex-girlfriend was a grad student in Dr. Chan’s lab when the Clemastine results were early. Very cool to see the progress!
Thank you for posting. I had optic neurotic in 2012 that gave me a diagnosis. I now use a rollator and have a lesion on my brain stem. I live in St Louis and emailed someone at Wash U about the study. It would be a miracle to regain some mobility. I have concrete hope.
Fantastic presentation, thank you.
Dr B i write you from Croatia And this is absolutely a Miracle!!!
Huge huge step forward
I have No problem to wait Bad things have already happen we have to just go forward thank you thank you so much
Maybe you could decide to try clemastine (Tavegil), which also promotes remylimation. P.S. Greetings from Zagreb. :)
This is exciting. Thank you dr Beaber for bringing those news to us!
This could be a very useful add-on treatment. I'd love to participate in the trial but I'm in Europe - I don't think they have any test centres here.
Even partial remyelination could be enough to alleviate the worst symptoms - a complete cure would be a miracle but even something that consistently resolved symptoms to a more manageable and stable state would be such a huge improvement on where we are right now.
If it advanced to phase III trials, there will probably be sites in Europe
Thanks a lot for sharing your knowledgments. I feel happier since I knew about the existence of Pipe 307. When do you expect you will have the conclusions of this study with patients? 30 weeks aprox.? Thanks a lot for your job and for providing a little bit of hope. Best.
clinicaltrials.gov/study/NCT06083753
Of course I am interested in participating in anything that might give me a chance for improvement!! However, I am 80 yrs. old, too old for any kind of help, I have a pacemaker which eliminates MRI’s. So I have missed the boat for any kind of help except for the 19 years I took Beta Seron and Avonex, very thankful for that help that I had!
I am SO happy about this marvellous news.
Thanks You so much Doctor B
Exciting, promising news! Thank you for sharing.
I am ready to take the test. I am from Algeria. I want to say when the medicine will be available because we suffer a lot of fatigue because of this disease. God willing, this medicine will be available as soon as possible.
انشاء الله
I started experimenting clamastine (tavegyl) my self (for 2 weeks now ) but only taking half of the dose they used in the study so taking (1,38mg x4 daily) (had tot buy it online because not available in France) I'm also taking a lot of different prescription medication (Gabapentine, Cymbalta, Tramadol for pain) I ll keep you informed on how it does help or not.
The full dose is required to have an effect. From experience, I tell you 3x2 (1.38 mg) + strenuous exercises. Unfortunately, they stopped producing Tavegyl and I can't find it anymore.
@@plamenkolev1415 found it online in Germany
Then search Tavegil STADA. You will find a lot of Tavegil tablets in Germany. Enjoy.
Be careful because Clemastine caused primary progressive patients to get worse in a recent trial, they had to halt the trial because of this. PIPE-307 being more targeted might be safer and more effective hopefully.
@@Peter-v2m Ari Green, who was not involved in the new study, said he is skeptical of the findings.
"We can't conclude much about an effect based on three patients, and the risk that this is a chance effect is extraordinarily high," he said. "It's premature to make any attribution of what they saw to clemastine itself."
how about mixing clamastine and lions maine mushroom.. i was diagnosed in 2019 after i caught covid as they say..(new flu) my right eye went into my nose giving me mad double vision and walking like a was drunk...anyway had all test lumber punch etc etc. im a builder they told me a cant work anymore in the game i was goin mad saying to the docs dont tell me i cant work anymore. im a hard person inside and takes alot to beat me. but guess MS got me....i started on Tecfidera which didnt work after 9 months i had new MRI and had new liasons so they put me on Kesimpta Bang alot better now and no new liason im stable..but i make my own tumeric and ginger shots Vit D 5000iu aday vitmain B12 x 2 aday and lion maine mushroom capsules and eating loads of chicken fillets and Brocilli...good work Dr Brandon loving ur insights
Thanks again Dr Beaber for your exceedingly relevant and informative videos. I take 5mg of Clemastine(Tavegil) occasionally on Friday or Saturday nights so the anti-histamine effect does not interfere with my day job. It puts me to sleep a couple of hours after taking it. I've read the new PIPE-307 paper now and I'm further encouraged that the approach I have taken of pulsing the medication is likely to be increasing my rate of remyelination by a decent amount. I have my own pattern reversal VEP experiments for measuring latency changes. This is done via a Meta Quest headset and an OpenBCI Cyton EEG headset. I speculate that fasting may also help with replenishing OPCs. Please do a video on 'myelin water fraction imaging' :) thanks again!
Be careful because an MS trial for Clemastine was halted recently for making primary progressive patients worse. I stopped clemastine for this reason because I thought it wasn't worth the risk
@@Peter-v2m thanks for the advice, I’ll look further into these disparaging results before continuing to pulse the medication. I do have RRMS but it is still a worry. I may need to keep a closer eye on blood inflammation markers if I continue the experiment.
Is the clemmastine helping your symptoms at all? If so how did you get that? Did your MS doctor give that to you?
@ not sure if it is helping unfortunately. I got a prescription from my GP but had trouble sourcing it. I found it online at an allergist chemist in Europe without a prescription needed.
I would love to participate in the trial - but am not located near you. I am not on any DMT's. I would have taken Clemastine, but can't deal with the side-effects. 🙂
Thanks so much for going through these studies x
Thanks for the video! I understand how remyelinating agents would help with the repair of recently damaged axons, but would glial scarring and axonal degeneration not prevent effectiveness in older lesions?
Your skepticism is valid. There are many aspects to multiple sclerosis pathology. Demyelination is just one part of the disease.
Thanks for the info! Hope it pans out!
Thank you for this review, Dr. Beaber! As for video ideas, a review of KYV-101, as well as CLAProMs be awesome.
things like that excite me as my wife is newly diagnosed MS , hopeful for near future
What do I have to do to try PIPE-307? Where do I have to go? I am fed up of MS. Now I feel I am dead in life and this is not acceptable. There are only two ways, recover or death. But, for sure I am not interested in living the way I am doing now, suffering all the time and being a disturbance for all the people around me. So in Spain where could I try it? Or where do I have to go to try PIPE-307? Please give me information
Here is the clincaltrials.gov site: www.clinicaltrials.gov/study/NCT06083753?term=PIPE-307&rank=3 I'm not sure there are any research sites in Spain.
Thanks , I think I'm off the study my MS is progressive@@DrBrandonBeaber
Thank you so much Dr for giving us hope! I was diagnosed last year with MS due to my medication taken for another autoimmune disease. I am 52
I assume you mean as a complication of a TNF alpha blocking agent. That is unfortunate. Hopefully the phase II trial will be a success, but we will have to wait and see.
@@DrBrandonBeaberExactly! I was taking adalimumab during 5 years for my ankylosing spondylitis. Now, I’m under rituxan.
@@DrBrandonBeaberExactly! I’ve been taking during 5 years adalimumab for my ankylosing spondylitis. Now I am under rituxan.
@@DrBrandonBeaberExactly! I was taking adalimumab during 5 years for my ankylosing spondylitis. Now I’m under rituxan.
Exactly! I was taking adalimumab during 5 years for my ankylosing spondylitis. Now I’m under rituxan.
Dr B,
Could you do a video about MS and "magic mushrooms" and what about the scar tissue left behind by the lesions? Like on the brain and spine. Thank you
Do you have a source on "magic mushrooms"? I would have to look into this.
@@DrBrandonBeaber sorry, can't help but to jump in. Check out Paul Stamets, he has a remyelinating stack of psilocybin+lions mane+nicacin.
That's really cool, thanks for posting that. A remyelinating drug would be awesome, I've gotten so used to the limitations from ON (healed most of the way) that I forget what seeing with good optic nerves is like (something happened to the other one too).
Donde la consigo en Chihuahua Chihuahua México me urge tengo em
Do you think it might work for PPMS ? Why are the trials only for those with RRMS 🙈 ?
Exciting! I would love to be part of that clinical trial! I’ll have to look it up
I wonder if this is successful if will be limited to only people with MS optic nerve issues .
I don't think so. The pathology in the optic nerve in MS is similar to in other areas of the nervous system. It's just easier to measure subtle changes in optic nerve function over short periods of time, so it's convenient for preliminary testing.
Thanks for sharing this video Dr. B Should those with MS be excited?
I think too soon
It's a long way away from being an actual commercial product. No one can predict how things will pan out in the phase II trial.
I wasnt diagnosed with MS but i got an autoimmune disease called ADEM (Acute Disseminated Encephalomyelitis) which damaged my myelin sheath and paralyzed my legs. So im praying this would be good for me too.
I don't have an ms diagnosis either, in my family we have several with CIDP and a few with FD, but I suspect it's not the founder gene. Anything associated with meyelin catches my attention. I do have a couple of relatives and friends with ms, so it doesn't hurt to keep an eye out for this stuff too!
Please get tested for MOG antibody disease if you haven't been already
Indeed exciting, thanks for sharing!
How well will these effects be for those with primary progressive MS?
Unfortunately, it is too early to determine this. My personal opinion is that all forms of multiple sclerosis share a similar underlying pathology, and the subtypes are not distinct diseases.
Are people in the phase II study noticing any improvements? Are they recovering lost functions?
I am doing a Phase II-b clinical trial (Vista Pipe-307). I was diagnosed with RRMS about 8.5 years ago. My MS is relatively mild and not visible to others. I started taking tablets about 33 days ago. I suspect that I may be in the placebo group, as I don't experience any side effects and subjectively don't feel any improvement in my symptoms. However, it may be too early to tell. What do you think @DrBrandonBeaber?
Thanks for discussing this! Do you believe this could also help patients with MOG antibody disease and NMO?
Heck yeah I would love ❤️ love to participate in this clinical trial
Now this is great news after 35 yo disabled , hopefully it will help me too.
We seem to be making progress, with this and the ABA 101 trials. Hopefully the end of the tunnel for us MS suffers is reachable 🤞🏻
It is really close. It is required by the "economic world". We have / are a huge cost for the system.
Fingers crossed 🤞
Indeed
Excellent 🤞🏼🤞🏼
Great news. I am interested in this study and willing to participate. Also can this be fast tracked. Thanks doctor
اريد ان اكون جزئ من هذه التجربة لو سمحت دكتور
انشاء الله ينجح هذا الدواء ويكون رخيص حتى يكون متوفر للجميع، الدعاء يا اخي
Thank you sir, I am hoping to get involved in this trial.
Best of luck
Thank you Doctor, this is fascinating. Do you believe we could hope the remylenining effect would also works in NMO, specifically on the optic nerve lesions in NMO?
Potentially yes, though the pathology of NMO is very different with primary injury to the astrocytes , so it is possible it could be effective in MS but not in NMO.
If proven effective, how much until we can see it in clinics?
How do i sign uo to participate in the clinical studies?
Hi your videos are fantastic. My suggestion for a new video is vagus nerve stimulation. I have read some studies showing that this has a positive affect on MS. There are lot's of non invasive devices on the market now that could be helpful for people.
Hello doctor., My name is Gabriel Pérez I'm 33 years old from Argentina and I'm a person with MS diagnosed on 2015 And I want to know If I could participes on the clínica trial of Pipe 307 and How I can communicate with the investigators of this trial. I Like Your Channel and the way In which you Treat the sargent. Hope Everything is fine i wait your message back.
I am interested in participating in trial. I was diagnosed 9/2023 with cognitive MS.
best if luck if you participate
This is great news. Thanks for bringing it to our attention Dr Beaber. My right eye has optic nerve atrophy and I’m considered legally blind at 20/200, so I’m not sure how much this drug could help someone like me.
Obviously this type of drug would only help with demyelinated but not transected nerve fibers, but ideally it would help people even with fixed longstanding neurological disabilities.
@@DrBrandonBeaber How will be satisfied If I get back sense of Touch even in one finger
There is hope and that is more then now I believe in your research as so many people
Thanks, Brandon. I haven't tried Clemastine but would be happy to trial pipe-307. Have you got any data on Clemastine and pipe-307 used together? Any data on metformin being used for remyelination? Omar Hayes
There is no data on clemastine and PIPE-307 used together to my knowledge. There is some data on metformin (not that impressive in my opinion). Perhaps this would be a topic of a future video.
@DrBrandonBeaber
Thank you for your reply, Brandon. How do I become part of the pipe-307 trial?
Omar
@@omarhayesdrums Here is the link: www.clinicaltrials.gov/study/NCT06083753?term=PIPE-307&rank=3 You can scroll down to see the contacts.
@DrBrandonBeaber hi Brandon, thank you for the link. I'm 52, which makes me too old!!
Much appreciate your replies.
Could this work in progressive MS (PPMS) ?
Possibly. I hope we will see a phase II trial in progressive MS at some point.
Would the remylenation of nerves that have been damaged/scarred for years still be beneficial?
If there is severe damage to the underlying nerve fibers, it might not be beneficial.
Is this helpful in treating bowel incontinence caused due to transverse mylitis???
What are the conditions to join the trial?
Must we be in California or will there be other study centers?
There are various other centers. You can find the link to more information about the study in the notes below.
Good day doc where do you need to stay for the medical trail?
You can find the link to the clinicaltrials.gov site in the notes below the video and find trial sites.
I would be interested in participating in the clinical trial.
I think I am not eligible for the clinical trial because of my age but I look forward to be able to try this drug if it gets approved and if I can afford it
I have issues with my vision but I want to sign up for the study! I became vissually impaired due to MS... well because I waited to long to get on medication. I have been good since then. anyway can I get into the study if I just turned 40? sorry for the bad typing...
I am interested in participating in the study if it is still ongoing.
Why are they doing RRMS? I know they need activity, but aren’t the RRMS people essentially stable now because of their DMEs? Desperation aside, my PPMS is always getting worse. I know it’s difficult to measure decline of progression of PPMS, but they’re measuring improvements.
Side note, I had a fascinating experience of improvement over this 29+ year journey. My left leg gradually weakened from the outset of my disease. It was essentially shot when my left leg started deteriorating 12 years later. My left leg then improved almost back to normalcy.
Hi drB and thank you, if this was to work, do you have any rough estimations of when this would be available on NHS in England and also do you it could it help reduce ‘pseudo relapses’?
I think it is several years away unfortunately. In theory, if it were a dramatically effective remyelinating agent, it could reduce pseudorelapses.
So could it work also with CIDP and other demyelination diseases? Trials?
If Clemastine has a sedative effective could they counter act with a stimulant?
I start this trial in November!! Hoping I’m one who gets the medicine! 🤞🏽
Good luck and thank you for participating in the trial and advancing research for everyone with MS.
Hi ! I'm also part of the trial ;) If you want to chat !
I would be extremely interested in participating? I'm 2 months post hsct transplant and I'm in the UK.
Then you can’t participate. (all info in the bottom link in the description)
Hi again Dr. B. Could you explain if you expect testing Pipe 307 only in RRMS or Secondary MS as well?
I think if the currently recruiting phase II trial is a success, we will see a trial in progressive MS. These trials are extraordinarily expensive, so pharmaceutical companies want to see some preliminary success.
@@DrBrandonBeaber Thanks a lot
If everything goes well, after how many years will there be a usable treatment?
What about Central Pontine Myefinolysis*?
Theoretically this could be effective in any demyelinating disease, but I am not aware of any specific evidence in central pontine myelinolysis.
Another remyelinating agent (NervGen) has a two-pronged approach, if I understand correctly. There’s something to remove the dead/scarred stuff then the remyelinating trigger can do its work. What’s actually going on at a lesion site? Is it just missing myelin or is there a barrier of junk left in its place?
I hope NVG-291 works well for MS. We are close to a repair treatment!
Please answer is Alexander disease and white matter disease and ms are same in recent my husband had mri they are telling brain looks white we taken mri for optic nerve is white
This is exciting news!
I pray that this drug can help us get some function back
🙏🏻
I really wanted to sign up for the trial but I take Ampyra and that’s exclusionary. I am following this closely, though. It’s more promising than most of the other stuff I’ve seen, but I’m trying not to be hopeful lol
What other DMT’s can’t be used while in this trial?
@@SaraC-us5ky Ampyra is not a DMT, the trial actually requires one to be stable on a DMT.
Mavenclad (Cladribine)
I’m definitely interested in participating in this clinical trial! Will go find this in the US.GOV site…..
Promising! I get so excited (and emotional) hearing about all of these studies and research. Potential remyelination will only work on axons that haven't been destroyed by the MS disease process, though. Probably lower expectation of these kinds of drugs working on those with advanced long standing MS. Too many of these axons have died off to be of much help.
You are right that even if this is effective, the individual benefit in someone with MS could vary widely.
I am too old to participate. God bless you!
Hopefully there will be a progressive MS trial at some pont.
I've had about 10 Optic neuritus, 5 bilateral, and left or right, my Optic Nerves have atrophied and all the Myelin is gone, legally Bling in one eye, my life is so hard vision and physically 😔🎗️👀
Would you please let me know how to participate in this study? Thank you
If you click this link you can find the contact information: www.clinicaltrials.gov/study/NCT06083753?term=PIPE-307&rank=3
Thank you doctor!
I want to join a case study!
How many years untill being comercial?
No one knows, if it has good results they can get a fast track, breakthrough therapy...
What would I expect? Half year after finishing phase 2 to analyse data, prepare phase 3 trials, get the money + 2-3 years of phase 3 + another year to get FDA approved so I wouldn't expect to be available for the general public before 2029.
@@tails86299thank you for answering
Reminds me of the very old drug Pentosan polysulfate and its use in slowing down the disease vCJD in patients. Sure it wasn't a miracle drug but it did improve symptoms and seemed to slow down the disease unfortunately lots of patients had to be taken off it because it was affecting LFTs to a serious degree.
Interesting. Thanks for sharing.
Is it available in india?
This is not currently a commercially available product. It is in early clinical trials.
What are your thoughts on blood patches and have ever seen or heard of men going wrong?
Do you mean a blood patch to treat post lumbar puncture headache?
@@DrBrandonBeaber yes I have MS. I have lumbar, puncture, bad headaches afterwards then had a blood patch and two days later I am in a wheelchair now I am essentially a paraplegic with only use of right hand, which is extremely weak. I am losing physical ability to speak. I was diagnosed with MS in 2021 after 25 years of military service. I am only in my mid-40s my doctor says MS is crazy and that’s the end of it. I have been getting Infusion and only getting worse over the last three years.
Hoping this hits lab research chemical stores soon or group buy for those in need.
Exciting
Doctor how about nvg 291?
I am very interested to participate in clinical trial, but I live in Belgrade, Serbia, and I am 60 years old, I have been told that I am too old for clinical trial. But I have RRMS for 24 years and I am EDSS 4,5. Yes, if there will be any chance for Serbia to participate I know that many of US would do it, and I am for sure one. Thank you for the hope and support.
I only see sites within the united states right now, but you can check the clinicaltrials.gov site for updates: www.clinicaltrials.gov/study/NCT06083753?term=PIPE-307&rank=3
Pozdrav iz Banja Luke
@@danijelapasic428 pozdrav iz Bg
i am from India ready to take the trial👍
Can I talk to you I am from India
Im from raj.
Hi ! I'm from France and participating to the trial in USA (doing back and forth)
@@dalensyara8433how long does It take? Please update about the outcomes.
Thx Dr. 🙏 even though I have been in progressive area for past 28 years but who knows.
Where could I try PIPE-307? I want to offer to make a study, I live in Spain
I am desperate, I am not afraid of dying, I am afraid of being a vegetable. This is not a quality life, I feel like I am dead in life. There are only two options, curation or death, being dead in life is not an option and now this is what it is like. Please contact me if you are looking for volunteers
Hi ! I'm from France and I'm involved in the Phase II study in Buffalo, New york ;)
@@dalensyara8433 and are you feeling better or improving in any sense? Is remielinization working good?
@@dalensyara8433are you noticing any improvement or benefit?
Hi, are you noticing any improvement or benefit? @@dalensyara8433
Is there a biological reason why this is an RRMS drug rather than a generalized remyelinating agent? Is it just to control the study?
There may be a progressive MS trial at a later time
@@DrBrandonBeaber The drug company website mentions a PIPE-791 in the pipeline. Links to mouse stuff. Wonder why it’s different. I’ve always thought PPMS is a separate disease but I would think remyelination would use the same agent. SCI too