Thank you, Dr. Beaber, for another great video! Looks like every drug works for only a small group of trial participants. My theory (not based on anything) is that MS is "umbrella" diagnosis for multiple causations of CNS demyelination. As dr.s & pharma industry prefer not to focus on causations, it's almost impossible to find one drug for all. As a result, unfortunately, patients have to go through trials & errors + endure all the side effects (which often are worse than MS' symptoms & irreversable). Thank you for being understanding & addressing alternative/ complimentary treatments.
I have non active SPMS and moved from Tysabri (6 years) to Ocrevus (2 years). I have not noticed any improvement in disability or function. I am at a 6.5 on the EDSS scale. I would love to see a video specifically discussing non active SPMS (explanation of progression, how to retain current function, possible outcomes, therapies that may be beneficial). Thank you for your videos!
Thanks for the suggestion. There are unfortunately not a lot of studies looking at this specific group of people. Most trial on progressive MS exclude people who are older and try to enrich the trial with inflammatory activity. I posted this video on reddit, and someone mentioned the HERCULES trial which studies Bruton's Tyrosine Kinase (BTK) Inhibitor SAR442168 in nonrelapsing SPMS: clinicaltrials.gov/ct2/show/NCT04411641. Perhaps you are Silvergirl7 on Reddit.
Thanks for your reply. I am on Reddit, but that’s not me. I also saw the HERCULES trial and checked it out. Unfortunately, trials are always too far from my Florida location. For the time being, I’m staying on Ocrevus and hoping it is slowing progression somehow. :)
Hello Dr. Beaber. Could you make a video for Active Secondary Progressive MS? Personally looking for help evaluating treatment efficacy of Ocrevus vs Siponimod (Mayzent) specifically for an Active Secondary Progressive diagnosis.
Thankyou sir for another excellent video . I'm currently using tysabri which hasn't helped my lower limb mobility at all. I will be discussing a different treatment option with my practitioner next month. Also I understand more women than men are affected by ms but I've also heard it can be more severe for men sometimes. That might be a topic to cover in the future. Thanks again for all the information you give us.
Thank you for the talk Dr. Beaber. I''m not much of a stats person, but this was very interesting and you broke it down in ways I could understand what all the lines and numbers meant. My MS is currently RR, but it is always good to hear that there might be some options to help those who have or develop into PP MS.
Interesting. An idea for a future video: motor fatigue/tremors from weakness and how you can lose the ability to walk for an hour (lol...laugh or cry) or two until you recover from the motor fatigue/weakness. I don't think it's ever been covered. Also, tremors if you haven't covered this.
Need to comment on JVC + people &DMT'S. Im PPMS 57. Diagnosed 2013 (49) ,believe it started in 2007. Tecfidera was just approved, did 4months. GI was bad. Gylenia 2yrs. Was good but got weak. Plegrity 2yrs. Horrible side effects, worked ok few days then faded off. Ocrevus 2yrs. I got worse at faster pace. Lost job, walk with cane,balance worse, nerve pain worse. Was 1st to get Ocrevus. After 3months it faded off. Waiting for 3months till next infusion was horrible. Too far apart for PPMS people for infusions. Changed Neuro, on Aubagio daily. Feel much better because of inflammatory medicine. Hydrocodone 10mg for pain, Ampyra, Ambien, vitamins. Left side body is weak. Grip, drop foot bad. (AFO) Small amount brain lesions, mostly T spine. Everyone is different, but Ocrevus for PPMS was an overkill seller. Was really discouraged.
@@DrBrandonBeaber Because of statements like these, I keep watching your excellent video's. Also I like that you don't shy away from statistics, and don't try to dumb it down for us. But that is probably my thing, and it might scare others away.
Kesimpta has not been specifically studied in progressive MS, but it is a b-cell depleter similar to rituximab and ocrevus which have evidence in progressive MS, so it could have benefit for some people.
The effect side was similar for rituximab and ocrevus, but they have different sample sizes. The the OLYMPUS trial had 439 participants. whereas the oratorio trial (ocrevus vs. placebo) had 732. In the OLYMPUS trial only 340 completed the 122‐week safety follow‐up. This significantly limits the statistical power when the effect size is small.
Professor Gavin Giovannoni talks about this and refers to it as the #thinkhand campaign. Here is the link on his blog: multiple-sclerosis-research.org/think-hand/ His argument is essentially that the axons to the lower extremities are longer and more susceptible to degeneration whereas the axons to the upper extremities are shorter and have greater resilience.
Husband has PPMS has been on Ocervus for a few years EDSS probably 6 or 6.5. He has still progressed. His worst symptom is probably the nystagmus. Neurologist suggested maybe the fenebrutinib trial? Have you heard about fenebrutinib? Or any other drugs in the pipeline for PPMS thanks
fenebrutinib is similar to masitinib which actually has a positive trial in progressive MS per a recent tweet by Dr. Barry Singer from a virtual MS conference: twitter.com/drbarrysinger/status/1305196299344646147 I can't say I know much about fenebrutinib specifically.
@@tabirthabrownfield8889 I would like to, but all I have is a tweet by Dr. Barry Singer: twitter.com/drbarrysinger/status/1305196299344646147 I could probably make a better video if I had a published journal article.
There is no set answer to this questions. Sometimes PPMS can be associated with long term plateau phases or improvement. I have a patient >70 who has PPMS with minimal symptoms. Also, some people with progressive MS could have significant mobility problems but still works time depending on their other symptoms and the nature of their profession.
@@DrBrandonBeaber i dont know doctor .I stay in a small place in india.i am 40 year old and my VEP test suggest demylenating disease .I am working now and have a 8 year old son.I will get my Mri done this week.I am super scared as i dont know what diagnosis will happen and whether i will be able to work for another 5 years as its very imp for me and my family.This is my fist sign hence plss tell me if i can work for another 5 years??
Dear Dr. Brandon Beaber This video gives me hope that I can walk normally again. I'm in Tysabri treatment for 56 weeks and still can't walk without help and most of time use wheelchair, by the way I'm 37 years old. I find hope in this video. If you have any advice to me I'm all ears. Thank you.
Thank you, Dr. Beaber, for another great video! Looks like every drug works for only a small group of trial participants. My theory (not based on anything) is that MS is "umbrella" diagnosis for multiple causations of CNS demyelination. As dr.s & pharma industry prefer not to focus on causations, it's almost impossible to find one drug for all. As a result, unfortunately, patients have to go through trials & errors + endure all the side effects (which often are worse than MS' symptoms & irreversable). Thank you for being understanding & addressing alternative/ complimentary treatments.
I have non active SPMS and moved from Tysabri (6 years) to Ocrevus (2 years). I have not noticed any improvement in disability or function. I am at a 6.5 on the EDSS scale.
I would love to see a video specifically discussing non active SPMS (explanation of progression, how to retain current function, possible outcomes, therapies that may be beneficial).
Thank you for your videos!
Thanks for the suggestion. There are unfortunately not a lot of studies looking at this specific group of people. Most trial on progressive MS exclude people who are older and try to enrich the trial with inflammatory activity. I posted this video on reddit, and someone mentioned the HERCULES trial which studies Bruton's Tyrosine Kinase (BTK) Inhibitor SAR442168 in nonrelapsing SPMS: clinicaltrials.gov/ct2/show/NCT04411641. Perhaps you are Silvergirl7 on Reddit.
Thanks for your reply. I am on Reddit, but that’s not me. I also saw the HERCULES trial and checked it out. Unfortunately, trials are always too far from my Florida location. For the time being, I’m staying on Ocrevus and hoping it is slowing progression somehow. :)
@@cgibson70 I'll definitely do a video on the HERCULES trial results when they come out.
Please do Dr. I am interested on Hercules results
been on ocrevus since June of 2017. No progression on MRI's. Physcally I did. But still gratefull. Diagnosed as PPMS
Hello Dr. Beaber. Could you make a video for Active Secondary Progressive MS? Personally looking for help evaluating treatment efficacy of Ocrevus vs Siponimod (Mayzent) specifically for an Active Secondary Progressive diagnosis.
Thankyou sir for another excellent video . I'm currently using tysabri which hasn't helped my lower limb mobility at all. I will be discussing a different treatment option with my practitioner next month. Also I understand more women than men are affected by ms but I've also heard it can be more severe for men sometimes. That might be a topic to cover in the future. Thanks again for all the information you give us.
Men are more likely to have primary progressive multiple sclerosis for unclear reasons.
@@DrBrandonBeaber Thankyou Brandon, I appreciate your time and I have read that myself.
Thank you for the talk Dr. Beaber. I''m not much of a stats person, but this was very interesting and you broke it down in ways I could understand what all the lines and numbers meant. My MS is currently RR, but it is always good to hear that there might be some options to help those who have or develop into PP MS.
Hopefully you will never need this information, but more knowledge is always better.
Interesting. An idea for a future video: motor fatigue/tremors from weakness and how you can lose the ability to walk for an hour (lol...laugh or cry) or two until you recover from the motor fatigue/weakness. I don't think it's ever been covered. Also, tremors if you haven't covered this.
@Kristopher Hank 🙂
Need to comment on JVC + people &DMT'S. Im PPMS 57. Diagnosed 2013 (49) ,believe it started in 2007. Tecfidera was just approved, did 4months. GI was bad. Gylenia 2yrs. Was good but got weak. Plegrity 2yrs. Horrible side effects, worked ok few days then faded off. Ocrevus 2yrs. I got worse at faster pace. Lost job, walk with cane,balance worse, nerve pain worse. Was 1st to get Ocrevus. After 3months it faded off. Waiting for 3months till next infusion was horrible. Too far apart for PPMS people for infusions. Changed Neuro, on Aubagio daily. Feel much better because of inflammatory medicine. Hydrocodone 10mg for pain, Ampyra, Ambien, vitamins. Left side body is weak. Grip, drop foot bad. (AFO) Small amount brain lesions, mostly T spine. Everyone is different, but Ocrevus for PPMS was an overkill seller. Was really discouraged.
Thank you, Dr Beaber! I enjoy your videos. I’d be interested in a video that explores Ocrevus’ effect on vaccines. Thank you!
I have a video on this topic (and on Ocrevus's effect on COVID-19 immunity): ruclips.net/video/7lMPrMUdPZM/видео.html
Thanks a ton Dr. for the informative video.
You're welcome. It's difficult to get this type of information all in one place, so I thought it would be helpful.
@@DrBrandonBeaber very very helpful sir...I'm highly grateful....'thank you' would not be sufficient, but, still thanks a lot
Thank you doc, great that you didn't just examine the licensed drugs.
There is definitely a lot of what I would call "licensed drug bias." We are all susceptible to marketing.
@@DrBrandonBeaber Because of statements like these, I keep watching your excellent video's.
Also I like that you don't shy away from statistics, and don't try to dumb it down for us. But that is probably my thing, and it might scare others away.
@@TheSokwe I figure that anyone taking the time to research their condition is smarter than the average bear.
@@DrBrandonBeaber Probably very true. Anyways I'm a fan, keep up the good work.
Hello dr beaber i am recently bike injury left eye optic nerve demage vission lose local eye hospital in not respondin vission please help me
Indeed
Thanks for the video. What are your thoughts on kesimpta and active SPMS? I just started I
Kesimpta.
Kesimpta has not been specifically studied in progressive MS, but it is a b-cell depleter similar to rituximab and ocrevus which have evidence in progressive MS, so it could have benefit for some people.
Why were the results for Rituximab's disability progression not statistically significant?
The effect side was similar for rituximab and ocrevus, but they have different sample sizes. The the OLYMPUS trial had 439 participants. whereas the oratorio trial (ocrevus vs. placebo) had 732. In the OLYMPUS trial only 340 completed the 122‐week safety follow‐up. This significantly limits the statistical power when the effect size is small.
What are the theories as to why these drugs are better at preventing upper limb function than lower limb? Thanks a lot
Professor Gavin Giovannoni talks about this and refers to it as the #thinkhand campaign. Here is the link on his blog: multiple-sclerosis-research.org/think-hand/ His argument is essentially that the axons to the lower extremities are longer and more susceptible to degeneration whereas the axons to the upper extremities are shorter and have greater resilience.
HOW BOUT COMMENTING ON HYDROXYCLOROQUINE-
I think you are waiting for this pilot study: pubmed.ncbi.nlm.nih.gov/34590328/ I'll wait for more data.
@@DrBrandonBeaber yes, please check for a current article-the results are shocking-thank you for responding
Husband has PPMS has been on Ocervus for a few years EDSS probably 6 or 6.5. He has still progressed. His worst symptom is probably the nystagmus. Neurologist suggested maybe the fenebrutinib trial? Have you heard about fenebrutinib? Or any other drugs in the pipeline for PPMS thanks
fenebrutinib is similar to masitinib which actually has a positive trial in progressive MS per a recent tweet by Dr. Barry Singer from a virtual MS conference: twitter.com/drbarrysinger/status/1305196299344646147 I can't say I know much about fenebrutinib specifically.
@@DrBrandonBeaber any chance that you could please do a video on masitinib?
@@tabirthabrownfield8889 I would like to, but all I have is a tweet by Dr. Barry Singer: twitter.com/drbarrysinger/status/1305196299344646147 I could probably make a better video if I had a published journal article.
@@DrBrandonBeaber no worries. You explain things so well, I really enjoy your videos
How long can you work with PPMS??I AM FROM INDIA PLSSS if you can answer?? Plsss doctor??
There is no set answer to this questions. Sometimes PPMS can be associated with long term plateau phases or improvement. I have a patient >70 who has PPMS with minimal symptoms. Also, some people with progressive MS could have significant mobility problems but still works time depending on their other symptoms and the nature of their profession.
@@DrBrandonBeaber i dont know doctor .I stay in a small place in india.i am 40 year old and my VEP test suggest demylenating disease .I am working now and have a 8 year old son.I will get my Mri done this week.I am super scared as i dont know what diagnosis will happen and whether i will be able to work for another 5 years as its very imp for me and my family.This is my fist sign hence plss tell me if i can work for another 5 years??
Dear Dr. Brandon Beaber
This video gives me hope that I can walk normally again. I'm in Tysabri treatment for 56 weeks and still can't walk without help and most of time use wheelchair, by the way I'm 37 years old. I find hope in this video. If you have any advice to me I'm all ears. Thank you.