HSCT vs Tysabri , Ocrevus, and Gilenya in Observational Study Explained by Neurologist
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- เผยแพร่เมื่อ 8 ส.ค. 2023
- I previously touted hematopoietic stem cell transplant as the most effective disease modifying therapy in MS, but did I overhype it? This video discusses an observational study looking out outcomes from HSCT compared to Gilenya, Ocrevus, and Tysabri.
Ocrevus Side Effects Explained by Neurologist: • Ocrevus Side Effects E...
Gilenya for Multiple Sclerosis Explained by Neurologist [Side Effects, Clinical Trials, Research]: • Gilenya for Multiple S...
Tysabri Side Effects Explained by Neurologist: • Tysabri Side Effects E...
Playlist on HSCT and MS: • HSCT Vs Lemtrada for ...
Is HSCT for MS overrated? [Neurologist reviews data VS. Tysabri, Ocrevus, and Gilenya]: • Is HSCT for MS overrat...
Selected Sources:
This is a repository copy of Comparative effectiveness of autologous hematopoietic stem cell transplant vs fingolimod, natalizumab, and ocrelizumab in highly active relapsingremitting multiple sclerosis: eprints.whiterose.ac.uk/20086...
ECTRIMS poster: ectrims2022.abstractserver.co...
Article from Neurology today: journals.lww.com/neurotodayon...
RCT Comparing Autologous Hematopoietic Stem Cell Transplantation Versus Alemtuzumab, Cladribine or Ocrelizumab in MS (RAM-MS): clinicaltrials.gov/ct2/show/N...
Comment or ask questions below! I would be happy to answer!
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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. - วิทยาศาสตร์และเทคโนโลยี
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Errata: I have misinterpreted the data in the graph at 10:23. It is actually gilenya that is superior to HSCT with a trend towards less disability progression, though it was not statistically significant. Thanks to @YouWoszczu for pointing out this error.
Hi Doctor B, I'm from Bulgaria. Diagnosed with MS in 2009 - RRMS, sinse 2015/16 SPMS, I've been treated with mavenclad, gilenya and few more. From May 2020 to October 2022 being on OCREVUS - EDSS from 5.5/6.0 to 7.0/7.5 . April 2023 make HSCT in Moscow, Russia. It's too early to say for shure but I'm getting better week after week.
May I ask how much the treatment cost in Russia?
I wish you all the best ❤️ greetings from Serbia
@@zoranagavrilovic9403 the price now is 50000€ for everything in hospital.
Good luck to you. Do you know what conditioning regimen you received?
Cyclophosphamide with supportive medicine and Fludarabine for first two days,
and only Fludarabine for the last 3-6 days.
@@DrBrandonBeaber
Why did you not go to the Bulgaria hsct clinic...?
Thank you very much Dr. Beaber for all this information. I am using Ocrevus since 2018 Ii was diagnosed with PPMS and at the moment I am stable. My disability is getting slightly worst with time but this is no news for PPMS. I wait for a new medical milestone related with Mywlin, but this will come in the future, I´m positive!
Very interesting. Thank you Dr. Beaber.
Hello, I was diagnosed after one big relapse with RRMS in January of 2022. I received HSCT at Clinica Ruiz in Puebla, Mexico beginning in November of 2021. I was on ocrevus for 2 full doses, but never felt better. With HSCT I immediately felt better. By the end of treatment, I was seeing some of my old self again. My fatigue is gone, I can work again, I can walk over 4 miles, just hiked a mountain. My MRI at 7 months showed a lesion at shrunk and my neurologist said unless you know what to look for in testing for nerve damage, you cannot tell its there. I noted there was no mention of quality of life. I no longer have to be on the gallons of drugs, I no longer have to rest after relatively small tasks and if my MS returns, I would do HSCT again. I have many connections now in the MS/AI community who feel the same way. The built up fear was unwarranted and what I experienced during MS was far worse. I know im just an anecdotal story, but there are hundreds like me. This treatment should not be undersold.
Hi mam, may I ask at which hospital/ country you had the procedure and how much it cost, the reason is my wife was recently diagnosed with ms and it hit hard and i life in iraq with limited resources i would be very grateful if you replied. Thank you
Hi doctor, thank you so muck as Always! Do you think that the datas with Kesimpta would be the same that we have with ocrevus?
Thank you for this video!!
I suppose i will just keep doing tysabri (as long as possible with jcv neg) and still hold out for remylination drugs.
Kind of shows how truly nasty MS is. If even chemo cant get rid of it.
That might be our closest we get to a cure- High eff DMT plus remyl drug. WDYT?
I absolutely love these types of videos. Thanks again!! This video actually answered a video request i gave you about how my neuro heard HSCT is not much better than our big DMT😁
Ty for your take on comparing these. Always good to hear other good neurologists opinions.
#Sharingiscaring
#MavencladMILF
It was very significant information. Thank you very much.
No problem
Thank you Dr Brandon for the excellent video this morning. You know what's weird I was on gilenya and then tysabri up until recently because I know JC virus positive so now I'm going to keisempta. The funny part is I felt like I was doing better on gilenya then tysabri because I was walking with a cane before and now I use a walker and I know maybe it's progression but it seemed like I felt better I'm the other medication. Anyway sir thank you again for another excellent video. One final note though it would be nice if hsct could become mainstream here in the US.
Thank you,Dr. Beaber! For video ideas: Do we know all cause mortality for each of these high efficacy treatments? Clinical trials results probably wouldn't have this info as some of them withdraw patients upon new relapses. Im hoping may b FDA's monitoring or data from large HMOs have those #s. Thank you for all you do!
Do we have any updates? Also, are the addressing the fact that a small group of people are having mobility issues related to ocrevus. I wish someone would do a study on that too.
Thank you Dr! Great video. Any idea when we might expect to see results from those 5 RCTs rolling in?
Unfortunately on the clinicaltrials.gov sites, they don't list estimated completion dates
Hi from Israel thank you dear doctor very interesting information keep going bless you
Hey there Dr. Brandon great video once again😊..off topic but may i ask would you treat a relapse thats been going on for months with steroids? Mine is extreme dizziness but i always get worse on steroids..how do u personaly treat chronic ms dizziness and do dmts treat ths symptom?
Thanks so much Dr. Beaber. I always enjoy videos comparing DMTs. I am doing well on mine now but if I ever need to change it is helpful to have this knowledge. It is great we have so many options now, but it is also hard because we have so many options now.😉
In Australia with public hospitals and PPMS I have almost zero options. RRMS has them all, and they are following strict guidelines from the drug companies preventing me from getting anything that will work.
I aso have to study it all mself, as they won't tell me anything and the yearly meeting is adversarial. They look for ways to blame me for their inaction.
I'll bet big $'s they have more funding then just about any other hospital in the world and classifying me as unhelpable is easy money.
@@PlatinumRatio ugh, so sorry that is happening. Here in the U.S. we buy have one drug approved for PPMS. I hope the research you have done has helped you to implement diet and exercise changes that can help with your symptoms.
What about compared to Alemtuzumab? This is a kind of HSCT light? The risks are smaller? Are Lemtrada side effects different from HSCT?
Great video as always. Do any of the current trials test Tysabri against aHSCT?
This study includes Tysabri as a comparator. Do you mean in a randomized controlled trial? No.
Is there a data on mavenclad snd hsct?
Is there a study or data comparing the different HSCT regimens? Will you do a video on that. Could you possibly explain the differences and risks between them?
There is some evidence that HSCT with the BEAM conditioning regimen is superior. You may appreciate this video: th-cam.com/video/mRW3QKuj9qk/w-d-xo.html
My father passed from MS complications and i was recently diagnosed on my 26th birthday. I have been taking Tysabri due to a lesion on my spine near c3 to c5. I only have one on my spine that is active and only 3 on my brain. Im hopefully i can get back to my old self. So far i have got my ability to walk back and its only been one month. I did have 3 days of solumedrol at 1000mg iv . Thank you so much ❤
I have even been able to think more clearly and have less brain fog
@@shannongodwin6397sorry for your loss did your father had it when he was young?
Great video, but why HSCT data changes when compared with other options since we already talking about the same sample?
The people who receive each treatment are different in important ways (age, level of disability etc), so the authors are attempting to correct for this by matching the samples.
Thanks for explaining this study Dr. Beaber. I've been on Ocrevus for a year next month and hoping to eventually switch to a BTK blocker to regain my full immune system (pending safety/efficacy). However, I would consider Lemtrada as a long term solution as well. I'm looking forward to see how HSCT compares to Lemtrada. I also read an article discussing Ocrevus as a potential induction therapy like Lemtrada. Are there any studies looking into that?
I heard about this a while ago.
Differences in efficacy for Ocrevus, correlated to the body mass have been noticed on post-hoc analyses of phase 3 studies; in short, people with lower body mass were given a higher dose per kilogram than the rest, and seemed to be doing better than those with higher body mass. So there are ongoing studies looking into increasing ocrelizumab dosage to maximise its efficiency.
I am not aware of any formal randomized trials on stopping b-cell depleters. There is some observational data that using rituximab in Sweden less often (such as once yearly) may be associated with equal efficacy and better safety.
I have similar hopes for btk-i as long term treatment. I am currently on kesimpta.
Why...? see "biogen bails on btk"
I got my life back from this. The manner it was done was using a dialysis machine with the Red Cross, they said it was a "hail mary" and "experimental" and I was "lucky to have the option" just from how bad I was, but god.... did it work!!! I also got Plasmaparesis as well. I can't believe how many people don't know Plasmaparesis or HSCT exists. I didn't understand until I've been diagnosed for 3 years now officially and learned a lot. It was no walk in the park, but when I relapse I lose entire limb function fully paralyzed. That's happened more times than I could count over the past decade. But I'd always brushed it off. I'd have a paralyzed arm, hand, or legs and it'd come back 3 days later, 5 days, 7 days, and that'd happen on and off since I was a teenager. In 2020, it stopped remissing tho and I got diagnosed bc my left arm and hand were paralyzed bad. I got my life back once they started doing dialysis, from having a central line, to doing dialysis part, adding chemo, then Ampyra, it's been a wild ride. I know it's hard for folks to get HSCT or Plasmaparesis, so I wish this stuff was cheaper and more accessible. I just wish people knew it isn't a cure tho. I'm not cured I still am on a dmt, but I can function like a real human being and I'm grateful for that. I can't imagine where I'd be without having that all done for me.
Hello there may i ask how much did you benefit from the treatment? And in which hospital you had it ? my wife was diagnosed with ms since July she is so depressed and i told her that hsct could save here greetings from iraq,thank you in advance.
Are there any studies that include clemastine and antiviral meds - especially over the long term, e.g., following HSCT vs ongoing as part of Ocrevus protocol vs following Lemtrada?
Not to my knowledge
Sir I need you help
Good info, doctor. I was considering getting aHSCT, but I think I'll stick with Ocrevus.
I would still consider it. I have only been home 2 weeks from getting HSCT and have noticed a big difference already.
I was diagnosed in 2018 with RRMS. I have been in Tecfidera rituximab, ane Lemtrada x3. Was still processing. With a 3.5 EDSS and I am already at a 3/2. And getting stronger every day.
@coreenloney5136
That's awesome! However, I have PPMS, so it's very unlikely HSCT will even work for me.
Until the BTK inhibitors arrive, Ocrevus is all that's available to me.
I actually went to Mexico. I did have family that did fundraising for me. But about half had PPMS or SPMS. And average age was 45/50.
Think again about hsct. You never know..
Thank you for the video. What might not be apparent to your viewers is that the big steps towards the end of the Kaplan-Meier plots are due to the very low numbers of people still being followed up in the study at that time ("number at risk" -> This represents the number of individuals who have not yet experienced the event of interest (such as disability worsening, or another specific outcome) and are still contributing to the analysis.)
You can see some tiny numbers there, which causes the variation of these events to be so high that statistically, you can't infer any difference.
This is often a problem with HSCT studies because people many travel long distances to receive the treatment and cannot follow up. Also, there can be significant retention bias (people who do poorly with any treatment are less likely to follow up)
Indeed, and what you said in your video about not all HSCT being the same is very true too! I am also looking forward to results from the studies that you mentioned at the end of your video. That will of course still take a while, but the main message is very hopeful already: “This study indicates that current “highly effective treatments” might perform as well as HSCT, which is a super intense treatment that arguably is the most effective treatment for MS at the moment-. That is great news for ppl with MS!”
36 y.o. USAF veteran,
bed bound in nursing care.
I’m NMO antibody positive.
Yet, I have an atypical presentation.
Symptoms: autonomic failure, poor tissue perfusion, joint/spine compromise, and severe global dryness w/ neuropathy…
I’m confident that stem cell therapy is what’s needed for me, but I can’t get access. I would like some tips or resources, as my decline has been sub-acute. *The VA has been apathetic and incompetent w/ my care.
🙏🏻
Do you think it makes sense to give on a DMT after doing AHSCT since its the highest in efficacy?
Most people would not recommend starting a disease modifying therapy after HSCT unless there is evidence of return of disease activity. The reason for this is some people who undergo HSCT have long term remission.
@@DrBrandonBeaber is the same for mavelclad sinse it also counts as induction therapy?
Do you think that the comparison btw HSCT and OCR in terms of hazard ration for relapses tells us sth about the biology behind OCR? I think I have read that Ocrevus requires about 6 months or so to get fully effective (Prof G mentioned it in one of his texts/ a comment on the ms research blog). Could it be that HSCT kills some responsible cells earlier while under Ocrevus we need to wait until they die "naturally"? I am just being curious. Thanks for the video!
I do suspect HSCT conditioning regimens such as BEAM + ATG or Cytoxan + ATG would likely have a much faster onset even though they would not appear to benefit people initially because of the side effects. By the way, b-cell depleters are thought to significantly reduce the risk of relapses and new MRI lesions by around 6-8 weeks, though there may be some therapeutic lag on other outcomes.
It is irrelevant since ms is not relapses and most people recover well from them even with no steroids.
Only minority have disabling relapses.
Most wind up in wheelchairs from years of
spms and not a single relapse attack in
rrms.
It is strange that the patients taking disease modifying drugs have such a very low relapse rate in this study. Does this match with your experiences with patients?
Regarding OCR long term effects: There are also some voices who suggest to use OCR as a form of induction therapy. Perhaps one day we will get some markers that will allow us to just so. Let us wait until the patents expire :)
This is an interesting idea, but I am not aware of any ongoing formal attempt to study this. Perhaps we will get some observational data in the future, but it may be highly confounded. There may be a bias against stopping in these studies as people doing poorly or having complications would be more likely to stop treatment. Whereas those who are stable may be intensely loyal to the drug even if they would have done just as well after stopping it.
I got HSCT and followed it with Tysabri as the risks seemed low for adding Ty and I wanted to be as aggressive as possible in disease management. Do you think we'd ever see studies of this kind of treatment combo? Maybe a strong motivator for HSCT is the single-treatment nature of it so combining it with standard DMTs wouldn't be worthwhile. Thanks again Dr for all you do.
How are you doing now?
Hello there may i ask how much did you benefit from the treatment? And in which hospital you had it ? my wife was diagnosed with ms since July she is so depressed and i told her that hsct could save here greetings from iraq,thank you in advance.
Thank you doctor, for this great study review.
I am 23 and began treatment with Tysabri 4 months ago, after 3 relapses within 8 months, and so far so good; I recovered well from all relapses.
I do however have a concern: I have heard people claim that they were stable for many years with Tysabri, until one day, they began getting progressively worse with no relapses, with a significant increase of their EDSS score.
My neurologist confirmed that this was a possibility when I brought it up to her. Do you happen to be aware of any evidence suggesting that HSCT could be better than conventional DMTs in that regard?
In terms of risk of future progressive multiple sclerosis at an older age, I don't think we have good data on this. It is extremely difficult to do long term studies like this. People move, change medical providers, or are simply lost to follow up. Once retention is
@@DrBrandonBeaber That's true, it would be tricky to conduct a long-term study like that with good retention.
I wonder if the likelihood of post-HSCT SPMS depends at all on the conditioning regimen. If so, that would be a real argument in favour of HSCT with a strong regimen like BEAM. But then again, this would be difficult to evaluate.
No.more important to do hsct early before any smoldering sets in. Burt
did non myelo and many many never
hit spms. His first were done in 2000 so decades gone by. Only matter of
time before DMT turn SPMS.
@@mary-vy3mo My thought exactly, but it's hard to confirm. I've been looking for evidence supporting the idea that HSCT does actually decrease likelihood of SPMS, and if so, whether it is necessary to perform before smouldering MS sets in.
see "tysabri brain atrophy ms news today"
see "normal brain atrophy after hsct for ms"
and there is your answer. Don't listen to
neurology lies on DMT.
@DrBrandonBeaber I think you make a mistake on "Gilenya vs HSCT: confirmed disability worsening" slide. Gilenya looks much better on the graph.
You are correct. I have placed a pin comment acknowledging this error. I must have been so enamored by the authors' confidence in declaring HSCT is substantially superior to gilenya that I assumed gilenya would perform worse in every outcome measure.
I've been on tysabri but I have only ever been given it every six weeks....
It can't possibly be as effective if only given every six weeks can it.
Is there any data comparing six weekly infusions against hsct?
I've asked to swap to ocrevus or kesimpta because at least I'll have them at the frequency they're supposed to be used at 😕
The pandemic was used as the excuse not to give me tysabri every four weeks.
Taking Tysabri less frequently has been reported to reduce the risk of PML (caused by the JC virus) and appears to be effective in observational studies. I am not aware of any comparison of extended interval dosing of tysabri to HSCT.
Oh weird that they are doing that. I was put on it right smack in pandemic Jan 2021 at 4 week interval.
Can you request to go to 4? I believe Dr Beaber has videos that it is effective at 6 weeks. Many people who test jc positive will switch to 6 weeks and stay on that for quite awhile until the jc virus gets too high. I don't know if that brings a smudge of comfort to know it's still effective but yeah.... we can't keep using pandemic as excuses..
I have been on ocrevus for 5 years, my last scan 6 months ago showed all my lesions. Today the NP walked in and told me "your MS is gone". What should I do?
I don't understand what you mean. The MRI scan showed complete resolution of all demyelinating lesions? These were chronic inactive lesions present and stable on numerous prior scans? This would be highly unusual in MS.
@@DrBrandonBeaber Yes Sir all leasions are gone.
I requested more testing, and she would only ask me what are your symptoms and what for. I mean they are gone. I reached out to you at when your book first became available, it was in regards to a project I worked on while in the service. I am not sure what to feel or what to think about this.
I sold my farm in preparation for the progress of this illness I am so confused. I am on the phone with Genentech now. Surely its mutually beneficial to get to the bottom of this. idk.
I forgot to add they have shown on scans for 8 years. all of them. Brain and spine.
@@callmethreeone I have never seen anything like this in my career. I have seen people misdiagnosed with multiple sclerosis who actually had acute disseminated encephalomyelitis (ADEM) who had complete resolution of all lesions. MS lesions can resolve, but scar tissue present for numerous years on several scans would not (generally speaking) completely resolve.
Hi Dr Beaber, thank you for sharing.I am on Tysabri and changing to Ocrevus or Kesimpta don’t know which one yet. In you opinion which one do you think works better? MS for the last 6 years, RRMS, barely any symptoms and no relapses. Tysabri has helped to keep MS stable. Thank you 😊
Maybe a reply or help here please? Thank you Dr Beaver 😊
Sir I have been following you vedios for some time. I feel you are sponsered or supported by big pharma. Why not give unbiased views. Thank you
So basically HSCT IS like reinstalling antivirus software?
No more like a hard reset... Turn Off...Turn On
Thank you for your Wednesday MS videos, Dr. Beaber. MS is such a fascinating AND frustrating disease. I wish I could look 50-100 years into the future to see where the state of treatment is. Personally, I think we will be at a point where we prevent people from developing MS through eradication of the EBV, and MS will become an extremely rare condition. Fingers crossed!
I suppose you could also been diagnosed 100 years ago and not have any treatment options, so perhaps you're not so unlikely. No doubt a lot will change (even in 5-15 years let alone 100 years)
It is sad that humanity does not have any kind of cryogenic sleep too be able to be able to wait till the future arrives 😅
@@ChallusMercer Even if this technology exists, for how long would you set the timer?
@@DrBrandonBeaber not for too long I would say, so I don't wake up on completely devastated planet. A timer for 50 years in the future sounds reasonable for me.
Btw nuclear fusion, a base on the moon and a new iPhone ofc, should be available till then😄
@@DrBrandonBeaberThe movie about that had already been made. Called Idiocracy 😀
Dr.Burt how's clinic & 1st patient Vladimir Putin addiction
There is no comparison for the results that the HSCT procedure to others. It saved my wifes life.
One thing we really need to look into for Ms or any other disease but let's focus on Ms for people that have it. How can we get a hundred per-cent of their treatment written off. Let's give personal example every six months and it cost $60,000. My wife and I health insurance premiums every month or more than our mortgage. United States healthcare system bankruptcy McKenna continue bankrupting people at an ever-increasing pace. Since Medicare doesn't cover long-term long term disability is going to wipe out any savings at family members they wanted to pass on to their El all be wiped out because Medicaid after 55 is a credit card and has to be paid. Select me for example would be couple million dollars Wipeout my whole estate going to pay all my medical.
Doctors need to start talking about that problem vs. Treatments the bankrupt people save their lives but bankrupt them at the same time
There are ways to save assets by giving
them away.
@@mary-vy3mo that's the game your parents have to give away all their assets welna dance of knowing that because there's a five-year look-back. How many parents have five years to give away everything to the children before they find out they're definitely sick 🤧 didn't have the state go after you for every penny of medical care you had for your parents in long-term disability which is hundreds of thousand dollars or millions upon millions your estate is completely taken away
'promosm' 😞