The Multiple Sclerosis Treatment Era (A Reflection on 30 years of MS treatments)
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- čas přidán 18. 07. 2023
- In this video, I read an article written by Dr. Fred Lublin and Stephen Krieger on the so-called multiple sclerosis treatment era, the time since the approval of betaseron by the FDA in 1993. How have things changed in the last 30 years? What do we know, and what are we still debating? Where do we go from here?
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Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He is a partner in the Southern California Permanente Medical Group and practices in Downey, California (South Los Angeles). He has several publications on MS epidemiology and has participated in clinical trials for MS therapeutics. You can follow him on twitter @Brandon_Beaber where he regularly posts about MS news and research.
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he video material by Dr. Brandon Beaber is general educational material on health conditions and is not intended to be used by viewers to diagnose or treat any individual's medical condition. Specifically, this material is not a substitute for individualized diagnostic and treatment advice by a qualified medical/health practitioner, licensed in your jurisdiction, who has access to the relevant information available from diagnostic testing, medical interviews, and a physical examination. To the extent that Dr. Beaber endorses any lifestyle change, behavioral intervention, or supplements, the viewer should consult with a qualified healthcare professional to determine the safety and efficacy of the intervention in light of their individualized information. - Věda a technologie
![Multiple Sclerosis Misconceptions Explained by Neurologist [Filmed from Oahu Hawaii!]](http://i.ytimg.com/vi/nPSwIzKFIA0/mqdefault.jpg)
Thanks to all involved for making MS a treatable disease.
Indeed
DMT are a joke...MS relapse is only tip of iceberg... real MS is brain atrophy
and spms/ppms.
Heart Disease and Cancer have made
real progress not fake news... What good are 20 drugs if not one one is able
to treat PMS or stop progression.
I was diagnosed with MS in 1994 and nothing was offered to me at that stage. In 1996 I was put on Avonex but the prescribing professor didn't even ask how I was handling it. He just sent a prescription renewal through the mail. I tried several other neurologists and the approach was similar. When I had a bad relapse in 2014, the approach taken was not vastly dissimilar to the approach taken when I first went to hospital. . Even now, I don't take any of the DMT's. The article describes what happened from a clinician/researchers point of view but from my point of view, as a patient, it just reminded me how chaotic the whole approach was. Gaslighting was common and I now have a very low opinion of physical therapists. They really need to lift their game. Despite 3 decades of diagnosed MS, I'm still well and although I see a neurologist each year, he doesn't even suggest a DMT. I appreciate your video but the article may have 'gilded the lily' a bit.
My experience has been similar and I was diagnosed more recently than you (2009)
Thanks Dr. Beaber. I really liked the article and your response. I, like you, find it frustrating that the EDSS scale is still be used as primary measure of MS progression. I would love for you to do a video on the topic of inflammation. We keep hearing that MS is an inflammatory disease. Could you do a deep dive into exactly what inflammation is and how we can minimize it? And if minimizing inflammation can help with progression?
Perfect idea ! I have been trying to keep my inflammation down without taking any DMDs and it seems to be working for me for now. I fast, eat anti inflammatory foods, manage stress, avoid sick people, get loads of sun, and supplement with zinc , magnesium and b vitamins, use almost no skin products, work out moderately - all the most important steps in trying to avoid too much inflammation in the body.
@@homeofficecooking333 we do similar things! I eat a whole food plant based diet, exercise regularly, get good sleep, practice mindfulness/kindness, and take supplements based on recommendations from my neurologist and naturopathic doctor. (And I am on a DMT).
Vickie: Not all inflammation is the same. Most DMTs are geared towards inflammation mediated by lympohocytes (b and t cells), but "smouldering" inflammation within the CNS may also be important (explained in this video: czcams.com/video/U46hyGkzgkM/video.html)
@@DrBrandonBeaber thanks!
The expression „IFN Wars“ was quite observant.
When I was diagnosed in the early ´00, I would always briefly glance at the desks of my Neurologists before our conversations to check for revealing pen colors. If I noticed orange pens (=Biogen), dark blue pens (=Bayer/Schering) or greenish Pens (=Teva) I could usually guess whether the final recommendation would be either Avonex, Betaferone or Copaxone Treatment. Not that either choice would have meant a significant difference in treatment efficacy. The advice would have probably just reflected the respective arguments that the sales reps had given them beforehand.
In other words, I remember it as a rather quaint period where decisions were easy and profits good for everyone involved..
Oh! And a second idea for a video topic please! Brain atrophy! The leaky pool model that you showed reminded me of it. What is the best way to measure brain atrophy? Why isn’t it part of everyone’s annual exam? How can we prevent it? Thanks so much!
Thanks for the suggestion Vickie.
Thank you so much for taking your time to bring this to us and explain it so well.
enjoyed the explanation so much, i feel very hopeful for the future knowing that i am young and i feel grateful for the researches and doctors like you all that are not willing to be satisfied with current DMT and are looking to improve our lives.
I come from a background of reading journal articles, and so the language of the article is not a huge barrier to me the way it might be for some, but it's a really important service you're providing just going through this material and explaining it in plain English.
Mark Twain once wrote, "I never write 'metropolis' for seven cents when they pay me the same money to write 'city'." I wish clinical researchers absorbed that advice a little better, and until they to it's a huge service you provide us with to stand in as an interpreter of this important research. Thanks for sitting down with us and working through this really important summary of the treatment landscape.
I was wondering if anyone here knows of charities or organisations that are working to bring more MS therapies to currently under-served countries? I feel incredibly lucky to be able to access the best medicines available, and would like to find ways to help others do so as well.
wonderful presentation - it's always good to know the exact time. one question, Dr. Brandon. have you ever met a patient who did everything a human can do in the setting of ms (dmt, diet, sun exposure, zen, so on), but his evolution being worse than expected?
None of that stuff matters..ms is still a progressive neurodegenerative disease...Zen will not help you
...hsct is the best hope.
Awesome video Doc! DXd in 2003. Havent seen a Neuro in 15 years. Im sure im in SPMS as of 3 years ago.. I musto go live life but would love to reach out to you more.
Yes, huge thanks to you and other specialists who have moved treatment on such a huge distance in what I'm guessing is an unusually fast pace in medical history. It does make me wonder whether another in another 30 years (or I guess 40 if you factor in the development process of betaseron?) the world might have got a hold on all phases of the disease. If drug companies stay interested, do you think this is possible?
Betaseron came out WEEKS after I was diagnosed. Didn't get on a DMT until 7 years later though, which I should've.
A great genius doc , love and regards ! :- Dr Hashash (Neurologist)
Indeed
Do you have a link to the article?
Reminds me of the success with Pentosan polysulfate in mice expressing human genes for the treatment of vCJD they had good results in mice but very minimal in human trials. Now the long term trial of Doxycycline in patients with genetic FFi is going to be interesting as the antibiotic has shows in vivo and in vitro to interfere with the misfolding of normal PRP.
I was lucky to be diagnosed in mid 90’s so started early with A/B/C
Meds.
Way to go science 🤘🏻
And ty Dr Beaber for the history lesson.❤ and i know that we will only continue to figure this disease out.
#MavencladMILF
#Sharingiscaring
Was it difficult to get betaseron early on, or was the lottery over by the time you were diagnosed?
@@DrBrandonBeaber it was over by the time I was dx. But I was lucky enough to have a nurse who had MS ( and family with MS) - so I was treated ASAP with Avonex ( after my initial steroid treatment).
So ancient- I remember reconstituting that med every time… the needle was HUGE!😳🤌
Thank God Copaxone was offered to me early. I took that 25 years then.
Me too, the abcs were IT. i was a kid then, now im 52 and still have pretty minimal issues.after all this time 🎉 THANK YOU Drs ❤
We didnt thînk i'd live so long 😂
@@DrBrandonBeaber hola! I went to abcs early on- Avonex- but injector gun was 2 scary - fainting was not good!
Hi doctor brandon sorry if i disturb you i'm a big fan of your work about ms on youtube. I'm from Italy also my self is on this terrible disease acutally i m on ocrevus in the future I'd like to switch on ata 188. Becouse seems that my ms coud be a progressive type acutually a i've had just one relapse with an enlargement of a lesion on the spinal cord.
I saw in one of your video that you take part of a trial as consultant for ata 188 it's effective? there is hope for people like me? Thank you for your work you are an amazing doctor
We have patient's in the Phase 2 EMBOLD clinical study (ATA-188 vs. placebo), but it is an ongoing blinded trial, so I don't know if it is effective. I will likely post a video if there are published data.
Hi d. Beaber. I know you can't give any medical advise but still I have more general question regarding lesions progression. I've been diagnosed with RRMS and am on DMTs. MRI scans every 6 to 12 months usually show 1, 2 small or no new legions forming. Neurologist concluded that the disease is in remission and under control. The problem is that some existing lesions in spinal cord grow in size, only a few mm (like from 12 to 14 mm from MRI to MRI) but still. Would you consider this a remission regardless of these lesions enlargement? Thanks
Not the doc, but my gut feeling is if there are lesion changes, how can you be in remission? Something that may provide some answers and may be worthwhile talking to your neurologist about.
This is just my understanding after doing some reading and talking to my neurologist about it. My understanding may be wrong, so take this with a shovel of salt. There's a newer blood test called neurofilament light chain. This neurofilament light chain is a component of your nerves and having it in your blood indicates that you are having nerve damage (ie are in a relapse. Some level is normal and elevated levels doesn't indicate that it is MS so can't diagnose MS. I think if you get a head injury from a baseball, it'll raise the blood level, but anyhow). My neurologist was saying that I shouldn't worry so much about the number but use it as a trend. I got tested right at diagnosis before starting ocrevus. Had a value of over 8 pg/mL. Got retested a few months after my ocrevus infusion, and it was at
I remembered that Dr. Beaber made a video on it a year ago!
czcams.com/video/5WaMZ36v6mA/video.html
Oop he brings it up at 10:30
Do you have any videos on MS and it's cross section with other auto immune diseases? I have Crohn's (30 years) and MS (1 year) and I've found doctors don't know what to do with me exactly as they have little experience with someone with both. However they are found together.
Some medications have evidence in multiple autoimmune disease. Some agents such as TNF alpha blockers (humira, etc) which work in Chron's disease may actually be deleterious in people with MS>
Did they rule out Behçet’s disease knowing it can mimic both Crohn’s and MS.
@@DrBrandonBeaber yes and CD20 antibodies are contraindicated for Crohn's. I learned that the hard way. And I don't think it's widely understood by Neuros
Thank you for informative video. Im from india. I want ur advice. How can i contact you? Plz reply
"the continued woeful inadequacy of spinal cord imaging" - I wonder what does this mean exactly?
I believe a brain and spinal cord MRI should be a standard part of at least one physical examination performed in adolescence (10-14 years of age). ESPECIALLY if one of the biological parents has MS. I am scared to death that my son, now 12 years of age and has a remarkable esemblance to me both in appearance and temperament, will go on to develop my MS. If he has a brain/spinal cord MRI that shows lesions associated with MS even with no physical symptoms, I would certainly put him on a DMT early to hopefully prevent later worsening disability.
There are a few issues with this. One is that an MRI performed in a very young person who is destined to develop MS could actually be normal as MS onset prior to puberty is rare. Another issue is that the treatment of "radiologically isolated syndrome" (an abnormal MRI with lesions typical of multiple sclerosis but with no clinical symptoms) is unclear. See this video: czcams.com/video/GyxUPJ7mZbY/video.html Yet another issue is that a large number of people have subcortical white matter lesions which could unintentionally be misclassified as demyelinating lesions as explained in this video: czcams.com/video/GNnba5HVvdY/video.html
@@DrBrandonBeaber thanks for your reply. But as a general rule, would you recommend MRIs for an adolescent of a parent with MS? I have heard the probability of an offspring of a parent with MS going on to develop the disease as high as 1 in 40.
Ty Dr. Beaber
How can i contact u doctor. I need ur advice 🙏 🙏 🙏
Just wondering: Did you ever meet or study with Dr. Stanley van den Noort? He passed in 2009, so I don't know if yo're familiar with his work.
I did not. I did not graduate from medical school until 2009
Hello. I have MRI were I have unchanged lesions. Some periventricular and two near the left anterior horn. Last one is perpendicular on the corpus callosum. Anything u suggest for me to do? My medical doctor says as they are unchanged - it should be ok. But I remember reading they were unusual in my age-group (25):
I can't give you advice here but I wish you good luck.
Looking forward, I think the article somewhat misses the elephant in the room: what incentives will big Pharma have to continue dumping huge investment budgets on expensive R&D and Phase III Trials for the next 30 years?
Looking back this century, there were several “waves” every 5-10 years that repeatedly created ultra competitive environmens: IFNs -> Oral Medications-> Induction Th. -> B-Cells…Each time, the winner went home with a $20-50 K Treatment option that was applauded as “state of art”..
What will happen if the current “BTK” Wave doesn’t produce such a “winner” this time round?
Is the bench of alternative treatments currently deep enough to warrant another $bill. race in the Pharma industry?
If not, the next 30 years could be very quiet compared to the past…
Please speak of the benefits from a Carnivore Diet and Vitamin D3 Protocol and the need for cholesterol. Thank you.
I have a video on the Coimbra Protocol (High Dose Vitamin D for Multiple Sclerosis): czcams.com/video/XPWNc0f2iHE/video.html Is there a specific citation you are referring to in terms of the carnivore diet?
Thank you, Dr. Beaber. Please see Dr. Anthony Chafee’s discussion with a doctor who is also a MS patient….Very informative.
czcams.com/video/rvp6hb2droc/video.html
😢treatments dont help everyone I still think we keep spinning the wheels on a better safer treatment and eventually a cure
You are unfortunately right. We have a long way to go.
I pray to God new medications that can cure all those AI diseases will be available sooner than later.
Interesting video, but as I continued hearing the discussion, I find the overview, discussion, and related efforts to outcomes, rather pedestrian, unremarkable, redundant, and most definitely well rehearsed, as the conclusions reached, only translate into, ummm, we still don't know, but at least we can at least make money by treating the symptoms, at least so our patients can feel good enough about paying us before they age out from perhaps.., another cause of their final demise...; Here, have a smoke and a shot of hard liquor while you wait, and make sure to help yourself to a glazed doughnut with your pumpkin spice late' before we give you today's IV, lol😅😅
Sir do you earn 600k dollars a year as a neurologist in USA? Plz reply. Thanks a lot.
Not really an appropriate question to ask. I'm sure board certified neurologists are compensated handsomely, as they should be.
Stop stop stop did you hear the doctor that takes the oath of cause no harm?? I know exactly when this was going on many of the doctors are doing speeches for MS drug companies and making thousands of thousands of dollars. Let's say there are two drugs for MS and one drug company that you thought was better to treat your patients but they were not paying you to speak versus another drug what you thought was not as good but work work but you weren't paid thousands of thousands of dollars. The way you brush by that was just terrible. This is a type stuff once it became known all of a sudden it swept under the rugs.
This is the same type of thing opioid epidemic. Drug companies bribing to prescribe set a doctor might be harmful. People are going to say oh but the drug companies this led the doctor's maybe at first if you do research many of those doctors saw their patients become addicted many died
I'm doing research right now on the corrupt medical industry in don't kid yourself if a drug companies pain a doctor thousands of dollars they're not going to do something unethica for their patience.
My research has shown bribing doctors has been going on for decades back in the 90s trips for their wives to Hawaii to prescribe more medication of their drug. They got caught stop for a while then started giving hundred $200 pens and other things like bicycles.
Doctors with hint to the drug wrap that they like to ride bicycles fancy ones expensive ones and one would just show up a week later in the doctors.
My family practice doctor for years any pharmaceutical wrap it was going lunch breaks whole staff but tell them no. But in job descriptions for many medical staff ever mention most of your lunches will be free because I knew the drug reps paid for lunches and other food to gain favor with the doctors. Luckily my doctor said he thought it was an ethical I would not accept anything from a drug rep. I asked him flat out what has he been offered years by drug reps? He said Scott, it's totally unethical and has to stop.