Hello my name is Elizabeth and I actually just finished taking this trial medication about a month ago. I can actually say I feel an improvement in my walking 🙏🏽
@@giorgos7six Hello, Yes of course. I been diagnosed with RRMS going to be 2 years this November. I am currently on Ocrevus infusions . My neurologist talked to me about this study drug called Pipe 307 and I agreed to participate because What If. I took this medication for 6 months. Before I started that medication even though taking Ocrevus, my balance was not that great. My memory was also not great. I have noticed that once I stoped taking the study drug about a month ago, my balance and memory have significantly improved. I feel like my balance improved from being at a 60% to an 80% improvement. I also remember almost everything anyone says to me. I did struggle with the side effects that came present while on the medication. Consisted with dry mouth , dry eyes, and super dehydration. I would also get a total of 8-9 tubes of blood drawn every time I would come in the office. I had to get vitals done first, Before I was given the pill, I would get a blood drawn. After that I would have to take a pill and wait an hour to get the blood drawn so they could see the reaction with the medication that my body had after the pill and get more blood drawn. I don't know if this worked for every one else that was or is on this study but for me, this is my experience with the study.
@@giorgos7six Hello, Yes of course. I been diagnosed with RRMS going to be 2 years this November. I am currently on Ocrevus infusions. My neurologist talked to me about this study drug called Pipe 307 and I agreed to participate because What If. I took this medication for 6 months. Before I started that medication even though taking Ocrevus, my balance was not that great. My memory was also not great. I have noticed that once I stoped taking the study drug about a month ago, my balance and memory have significantly improved. I feel like my balance improved from being at a 60% to an 80% improvement. I also remember almost everything anyone says to me. I did struggle with the side effects that came present while on the medication. Consisted with dry mouth, dry eyes, and super dehydration. I would also get a total of 8-9 tubes of blood drawn every time I would come in the office. I had to get vitals done first, Before I was given the pill, I would get a blood drawn. After that I would have to take a pill and wait an hour to get the blood drawn so they could see the reaction with the medication that my body had after the pill and get more blood drawn. I don't know if this worked for every one else that was or is on this study but for me, this is my experience with the study.
The FDA needs to stop distinguishing between RRMS, SPMS, and PPMS, and make all MS drugs available to ALL 3 MS types. We need this remyelination drug desperately.
I also believe about your POV , because it same disease regardless developed of disease all type demyelination disease and oligodentrocyte present in all human with different response , but this not prevent the remyelinations medication for progression disease But by the way there medication called pipe 791 also in clincal trails in phase one specifically for ppms and spms
May God bless you and your family Dr. Hawley you are such a blessing and you give such hope with the information that you provide. God is working through you to give those of us who have multiple sclerosis hope.
Thank you for the information. I am hoping to get chosen to participate in the PIPE trial that is taken place at UC Berkeley. My biggest problems are my vision, and my walking has taken a recent hit.
I dont have MS but I was diagnosed with an autoimmune disease called ADEM that damaged my myelin sheath and paralyzed my legs so I'm hoping this would be beneficial for me too.
Great video, and thank you for making it. And please re read this a few times..... From the MS community thank you for being you and contributing in your own way to helping/informing us. You're upbeat, chilled and most importantly have a kind nature about you. Some times it can feel very lonely with this disease but you are a little ray of light just when we need it. Thank you from the UK.
Thank you so much for your kind words! I'm so pleased to hear that the content shared here allows you to feel supported, as well as encouraged - that is one of the many goals I had when deciding to begin sharing content☺️
Thank you so much Dr G! You have no idea how helpful you are and how much we need this. It's a terrible disease .. we need this hope and this to work and happen for us.❤
Good afternoon! I live in Hungary, Europe and allways watch your videos. I'm on Ocrevus treatment and used to take Clemastine for my PPMS. I think (belive) PIPE 307 will be the answer for all of us! Sorry to say but I have no chance to join this clinical trial (because I do not live in Sarasota FL anymore). What do you think, how long will it take to get prescription for PIPE 307, if it works? Thank you for your videos!
@@thres34if successful next year you will have two to three years phase 3 checking the results. So we would get data at the end of 2028, approved next year. But of course, if it is successful we would see designation as breakthrough therapy, orphan drug, people getting the drug outside the trial etc. that would make the process a bit faster. In one decade we will have some car t therapy, that we will use like mavenclad or lemtrada as induction therapy.
@@thres34there is a big pharma as Janssen which has invested million of $ . 10 years are a long term. I bet 4 years and it will be ready for the market. COVID has teached us a great lesson. Only in us, 1 million of MS patients which represent a cost of 80 billion $ per year. That's incredibile. We are so close.....
Hi Doc, I'm from Italy and I have RRMS. I knew about Pipe-307 just a few weeks ago. I hope you should give us frequently updates about the progression of Phase 2 trial of this drug, which is now in progressive dosage increase. Phase 2 probably ends in september 2025. I'd like to know if people with deases is re - myelinating as mice and brain of death patients during lab tests. A huge hug from Cagliari, Sardinya, Italy
I am 48 and was diagnosed with PPMS about a year ago. I'm pretty healthy aside from the MS, and my EDSS is still fairly low. I'm wondering what the timeline is for these clinical trials... My understanding is that the more MS progresses, the more unlikely it is that remyelination can occur. Hoping I won't be too late!
my doctor took me off clemestine based on research that showed progression 4 cases of spms. i liked it very much. i actually showed lessoning of my lesions. how can i convince her to let me go back on it?
Likely a few years, but since this is an entirely new class of medication, I am keeping hope that it might be fast tracked through the review process, which could speed up how soon it’s available for patients.
CPM, CENTRAL PONTINE MYELINOLYSIS? I can't walk, talk,open my hands, breath, swallow, hold my breath, etc, etc......I was given CPM in 2017 at 46. i am a USAF Veteran, 90-94. I'm trying to raise my cholesterol and hope to start Clemastine asap. Think it will work??
(Being both a bit playful and sacastic with my comment. Heads up:) So, let Me see if I've got this straight: Here, the Medical Industry decides to take it upon themselves, to Establish and Control most of the factors that make Original Research even possible, then as Research is conducted, instead of considering the input and advice of Others, who may have no real interest in being medical professionals, but do have the ability to Analyze, Understand, and Solve the Very Complex Problems, and Then Offer the Answers That Tend To Take Many Years To Address. But alas.., The Arrogance and the Greed of the Medical Industry tends to struggle from it's own ill winds I suppose. ...Honestly: This is likely, why Other Countries are so now Dismissive of This Country's Absurd and Rather Snobbish approach to finding answers to medical questions.. Just an Opinion, but a Good One.. Peace! \\//
Hello my name is Elizabeth and I actually just finished taking this trial medication about a month ago. I can actually say I feel an improvement in my walking 🙏🏽
That's great to hear! I'm so happy to hear that!
Hi Elizabeth, please give us more details on your wonderful and so promising walking improvement... its so important for all of us who are struggling!
@@giorgos7six Hello, Yes of course. I been diagnosed with RRMS going to be 2 years this November. I am currently on Ocrevus infusions . My neurologist talked to me about this study drug called Pipe 307 and I agreed to participate because What If. I took this medication for 6 months. Before I started that medication even though taking Ocrevus, my balance was not that great. My memory was also not great. I have noticed that once I stoped taking the study drug about a month ago, my balance and memory have significantly improved. I feel like my balance improved from being at a 60% to an 80% improvement. I also remember almost everything anyone says to me. I did struggle with the side effects that came present while on the medication. Consisted with dry mouth , dry eyes, and super dehydration. I would also get a total of 8-9 tubes of blood drawn every time I would come in the office. I had to get vitals done first, Before I was given the pill, I would get a blood drawn. After that I would have to take a pill and wait an hour to get the blood drawn so they could see the reaction with the medication that my body had after the pill and get more blood drawn. I don't know if this worked for every one else that was or is on this study but for me, this is my experience with the study.
@@giorgos7six Hello, Yes of course. I been diagnosed with RRMS going to be 2 years this November. I am currently on Ocrevus infusions. My neurologist talked to me about this study drug called Pipe 307 and I agreed to participate because What If. I took this medication for 6 months. Before I started that medication even though taking Ocrevus, my balance was not that great. My memory was also not great. I have noticed that once I stoped taking the study drug about a month ago, my balance and memory have significantly improved. I feel like my balance improved from being at a 60% to an 80% improvement. I also remember almost everything anyone says to me. I did struggle with the side effects that came present while on the medication. Consisted with dry mouth, dry eyes, and super dehydration. I would also get a total of 8-9 tubes of blood drawn every time I would come in the office. I had to get vitals done first, Before I was given the pill, I would get a blood drawn. After that I would have to take a pill and wait an hour to get the blood drawn so they could see the reaction with the medication that my body had after the pill and get more blood drawn. I don't know if this worked for every one else that was or is on this study but for me, this is my experience with the study.
Wow, that is really good to hear
The FDA needs to stop distinguishing between RRMS, SPMS, and PPMS, and make all MS drugs available to ALL 3 MS types. We need this remyelination drug desperately.
I also believe about your POV , because it same disease regardless developed of disease all type demyelination disease and oligodentrocyte present in all human with different response , but this not prevent the remyelinations medication for progression disease
But by the way there medication called pipe 791 also in clincal trails in phase one specifically for ppms and spms
This would be a game-changer for me and others who want to get better not worse!
I have MS, and I've always thought this was the way pharmaceutical companies should go. God I hope this works.
There is hope for the future☺️
Hi doctor @@DoctorGretchenHawley
I pray that this will be the answer we all need and want.
Yaa sure🎉😊
Praying 🙏🙏🙏🙏🙏 have secondary MS
@@annmariemoreno3904 me too
May God bless you and your family Dr. Hawley you are such a blessing and you give such hope with the information that you provide. God is working through you to give those of us who have multiple sclerosis hope.
Thank you for the kind words☺️
Plz help me I have ms prblm since 10 years I took anovex inj I am poor plz help help me how to cure ms
Amazingly articulate,, detailed, concise while being sunny and definately not a pharma schill.
top of the field many thanks Dr. Hawley
Always happy to share!
Thanks so much for sharing such good news dr. G.
Happy to share!
Thank you for the information. I am hoping to get chosen to participate in the PIPE trial that is taken place at UC Berkeley. My biggest problems are my vision, and my walking has taken a recent hit.
*taking place. They are currently recruiting for phase 2
How exciting!! I hope you get in!
@@DoctorGretchenHawleyانا من الحزائر اريد المشاركة ف تجربة الدواء
I dont have MS but I was diagnosed with an autoimmune disease called ADEM that damaged my myelin sheath and paralyzed my legs so I'm hoping this would be beneficial for me too.
My boyfriend has CMT, which also causes myelin sheath deterioration. Hoping this will eventually help him too.
I'll definitely be keeping an eye on this research!
I was also diagnosed with ADEM over 10 years ago, and I really hope that this will also help us.
Cool, I'm very interested
Great video, and thank you for making it. And please re read this a few times..... From the MS community thank you for being you and contributing in your own way to helping/informing us. You're upbeat, chilled and most importantly have a kind nature about you. Some times it can feel very lonely with this disease but you are a little ray of light just when we need it. Thank you from the UK.
Thank you so much for your kind words! I'm so pleased to hear that the content shared here allows you to feel supported, as well as encouraged - that is one of the many goals I had when deciding to begin sharing content☺️
I can definitely join your best wishes!!! Good luck from Canada!!! I am a woman 52 years old just diagnosed with MS
I truly hope so. I've lost all hope with the FDA so I'm crossing my fingers.
Thank you for sharing your thoughts! There's definitely hope for the future!
Thank you just the boost every MS'r needs 🥰
I'll definitely continue to share updates!
🙏🏻🙏🏻🙏🏻 I was diagnosed with MS 31 year ago,and i was told a cure was just round the corner😒 some corner🙄
Thank you for sharing! There is hope for the future!
How are you doing are you progressive now or have you been able to hold on to your abilities
Thanks for sharing the important information.
Always happy to share!
Thank you dr for always keeping us up to date on ms💞
Not a problem!
That gives me so much hope to get some functions back and stops M S from worsening.
I'm so happy to hear that you found this encouraging!
Thank you soooo muchh❤❤❤❤
Always happy to share!
Sounds very hopeful!
Absolutely!
Thank you so much for your knowledge as they say knowledge is power! and little do you know you give us power..!😊
Always happy to share!
Thanks for this, always informative.
No problem! I will definitely continue to share updates!
Yes great to hear positive research and thank you for sharing x😊
Of course! Happy to share!
Thank you for the information!
Happy to share!
Thank you so much Dr G! You have no idea how helpful you are and how much we need this. It's a terrible disease
.. we need this hope and this to work and happen for us.❤
There's definitely hope for the future!
Sure
Thank you for this information...🌱🙏
Not a problem! Happy to share!
Great news🙏🙏
There's definitely hope for the future with all the new MS research that is being conducted!
Thank you so much. Very informative
Always happy to share!
Good afternoon! I live in Hungary, Europe and allways watch your videos. I'm on Ocrevus treatment and used to take Clemastine for my PPMS. I think (belive) PIPE 307 will be the answer for all of us! Sorry to say but I have no chance to join this clinical trial (because I do not live in Sarasota FL anymore). What do you think, how long will it take to get prescription for PIPE 307, if it works? Thank you for your videos!
Always happy to share!
If successful will take years before it get approved, at least 10 yrs from now I think.
Same here but possibly will help someone else 🤞❤️
@@thres34if successful next year you will have two to three years phase 3 checking the results.
So we would get data at the end of 2028, approved next year.
But of course, if it is successful we would see designation as breakthrough therapy, orphan drug, people getting the drug outside the trial etc. that would make the process a bit faster.
In one decade we will have some car t therapy, that we will use like mavenclad or lemtrada as induction therapy.
@@thres34there is a big pharma as Janssen which has invested million of $ . 10 years are a long term. I bet 4 years and it will be ready for the market. COVID has teached us a great lesson. Only in us, 1 million of MS patients which represent a cost of 80 billion $ per year. That's incredibile. We are so close.....
Thank you, sounds promising. 🙏🤞🙂
Definitely!
Thank you so much for that information!!!
Of course! Happy to share!
Thank you, Gretchen. Always fascinating.
Always happy to share!
Ensayo clinico muy interesante estaremos aatentos en Europa para conocer resultados del estudio fase 2 .
I found the study, but I'm not sure if I qualify, I will ask my neurologist. Thanks for the info appreciate.
You're welcome! Happy to share!
Thank you!
You're welcome!
Hi Doc, I'm from Italy and I have RRMS. I knew about Pipe-307 just a few weeks ago. I hope you should give us frequently updates about the progression of Phase 2 trial of this drug, which is now in progressive dosage increase. Phase 2 probably ends in september 2025. I'd like to know if people with deases is re - myelinating as mice and brain of death patients during lab tests.
A huge hug from Cagliari, Sardinya, Italy
You need to wait. But I think this will be an incredible progress and step forward!
Great news ❤❤
Isn't it?!☺️ I'm excited for further research!
I am 48 and was diagnosed with PPMS about a year ago. I'm pretty healthy aside from the MS, and my EDSS is still fairly low. I'm wondering what the timeline is for these clinical trials... My understanding is that the more MS progresses, the more unlikely it is that remyelination can occur. Hoping I won't be too late!
I am bedridden since 2006, unable to go to bathroom without help. Diagnosed with ppms, I am open for any clinical trials
my doctor took me off clemestine based on research that showed progression 4 cases of spms. i liked it very much. i actually showed lessoning of my lesions. how can i convince her to let me go back on it?
Unfortunately I don't have a direct answer to that, but don't ever stop advocating for yourself!
Im so desperate for this to work!!
I will definitely continue to share any updates as they come out!
Thanks you❤❤
You're very welcome!
I have ms my left eye vision loss how to cure I am so poor no money plz tel me what do
How can we get on the trial?
To my knowledge, there are a few sites enrolling right now - you can find them at clinicaltrials.gov if you’re in the US and search for PIPE-307
For whatever reason, I can't find i can't find the specific episode. Can you please help Gretchen
Please tell us when it is available world wide.
I will definitely continue to share updates!
If this works how long will it take for it to be available to us? How many phases? Is it years?
Likely a few years, but since this is an entirely new class of medication, I am keeping hope that it might be fast tracked through the review process, which could speed up how soon it’s available for patients.
CPM, CENTRAL PONTINE MYELINOLYSIS? I can't walk, talk,open my hands, breath, swallow, hold my breath, etc, etc......I was given CPM in 2017 at 46. i am a USAF Veteran, 90-94. I'm trying to raise my cholesterol and hope to start Clemastine asap. Think it will work??
I’m not sure! This would be a great question for your healthcare team.
they can try it on me 60 male ppms healthy, super optimistic edss 3.5-4
very good at recording and sticking to details when need be. will travel
(Being both a bit playful and sacastic with my comment. Heads up:)
So, let Me see if I've got this straight: Here, the Medical Industry decides to take it upon themselves, to Establish and Control most of the factors that make Original Research even possible, then as Research is conducted, instead of considering the input and advice of Others, who may have no real interest in being medical professionals, but do have the ability to Analyze, Understand, and Solve the Very Complex Problems, and Then Offer the Answers That Tend To Take Many Years To Address. But alas.., The Arrogance and the Greed of the Medical Industry tends to struggle from it's own ill winds I suppose. ...Honestly: This is likely, why Other Countries are so now Dismissive of This Country's Absurd and Rather Snobbish approach to finding answers to medical questions.. Just an Opinion, but a Good One.. Peace! \\//
Hey ۔۔do you think this drug or cannestein would work for those whoes fiber loss is due to peroneal nerve injury as well?
I’m not sure - I’d have to see what research says.
How long will the human trials take?
Likely a few years, but it could be fast tracked, which would speed up the process.
@@DoctorGretchenHawley hope so!!
Now we wait for human trials
Hi Jerry, how I loved laughing at your movies as a child. Yes, I know he's passed. But you gave me a pleasant memory.
Would be nice but I'll never get good treatment thanks to horrible insurance. What a world we live in
I'm so sorry to hear that! It truly is unfortunate.
@@DoctorGretchenHawley sure I'll figure something out. But this isn't the way things should be. I see it in my own patients constantly. I work in EMS
Please God let it be🎉
🛐🙏🏽🧠🙏🏽🛐
🤞🧡
Hopefully they find a cure
There's always hope for the future!
If it's pharmaceutical and petroleum derived, then it will never work.
Lionsmane does work. Mushroom.
Ms patient since 2011.
Thank you for sharing what has worked for you!
Could You give us more info about? Where can we buy it?