Stem Cell Transplant for Multiple Sclerosis (aHSCT)
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- čas přidán 16. 06. 2020
- Start watching to learn about how autologous hematopoietic stem cell transplant works for multiple sclerosis. How does it work? What are the different conditioning regimens (BEAM, cyotoxan, busulfan, ATG, etc)? What are the side effects? How does it compare to traditional disease modifying therapy?
Comment or ask questions below! I would be happy to answer!
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My book "Resilience in the Face of Multiple Sclerosis" on Amazon: www.amazon.com/dp/B07WP7H5LK
Sources:
HSCT review in general: www.ncbi.nlm.nih.gov/pubmed/2...
HSCT in MS review: www.ncbi.nlm.nih.gov/pmc/arti...
Swedish case series AHSCT in aggressive MS: jnnp.bmj.com/content/85/10/1116
Pilot Study in progressive multiple sclerosis: www.nature.com/articles/17009...
Canadian study in aggressive relapsing multiple sclerosis: www.clinicalkey.com/#!/conten...
2010 registry for HSCT for autoimmune disease mortality stats: www.ncbi.nlm.nih.gov/pubmed/1...
Review of HSCT for MS mortality stats: www.ncbi.nlm.nih.gov/pubmed/2...
Professor Giovanoni’s blog-post on HSCT: multiple-sclerosis-research.o...
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.
Follow me on twitter: / brandon_beaber
Music: INNER GRACE - Copyright 2018 Wilton Vought
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The 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
WoW, that disability is actually quite depressive. What I mean is, I feel very limited in my ability to walk/limp, yet I can walk several hundred meters with no cane or walker (but only on smooth pavement, walking on gravel is a real challenge slowing me down to something like 150-200 meters in half an hour), so formally I'm actually not that disabled (yet). Well... I do realize it can be worse and my current "bad" condition is not "THAT bad" compared to some other less fortunate people.
Excellent video! This was the most informative explanation of aHSCT I have found. Thank you so much for putting this together. I wish all us MS'ers could get this procedure.
Thanks for the comment.
I applaud you Dr Beaber. There are a lot of neurologists who are very resistant to even have a conversation about HSCT. I am in remission for the first time ever since having HSCT, something the 4 different DMTs were unable to achieve.
Completely agree with you about the misunderstanding in this instance about the role of the stem cells play. When I tell people about the treatment I had the impression is that the stem cells are somehow magic, that they reset the immune system, but it is the destruction of the immune system that is the backbone of this procedure.
Hi how long ago did you do HSCT? I am 3 months post transplant as of Sunday.
Tanya-Marie P hi Tanya. I had it in October 2019. I have never felt better. I feel that for the first time ever I am truly in remission.
Thanks for commenting and keep of the good work with your channel.
My neurologist didn’t even know anything about it! 😡
Where did you have it done? My son’s neurologist seems to think it’s not a treatment to consider. He is young (26) and has constant fatigue. It has de hindered his ability to work and attend to daily routine.
wow, you are a hard-working man for your community. Thank you very much
No problem. I enjoyed researching the video and learned a lot myself
@@DrBrandonBeaber hello i am a MS sufferer with type 1 is this treatment suitable for me?
Type 1 diabetes
@@susanmartin957 I'm not sure what you mean by "type 1." Unfortunately, I wouldn't be able to give you personal medical advice here.
Oh sorry not looking for advice but curious if the treatment would help 2 autoimmune diseases
I'm a little over a year out from HSCT. Recovery has gone almost textbook beautifully, with only minor issues along the way. No new lesions, no relapses, EDSS is stable.
:)
I am so happy for you, conrgrats! Did you ave RRMS/PPMS? Where did you recieve HSCT?
@@ernietollar407RRMS in Seattle as part of the BEAT-MS trial
This is the most thorough explanation I've heard to date. I am 3 months post AHSCT I went to Puebla Mexico to do it. I am extremely hopeful about it halting the disease and helping heal disability. I am an edss 6.5 currently
I hope you do well. How are things going so far? Do you know what conditioning regimen you received?
@@DrBrandonBeaber yes non myelo Its going pretty well. In physio to get stronger.
Hi Tanya, Any update??? How r u
Hi Tanya
I am also 6.5 EDSS how are you doing since HS T?
@@FRIGIDBAND Hi. It has definitely been a rollercoaster. The spasticity that has set in is the biggest problem I have. Everything else is fine but I need this spasticity to go away
I’ve been waiting for this video for quite sometime. Thank you so much for your hard work to provide such an informative video.
:) Thanks. I'm glad you got something out of it.
I had HSCT at Clinica Ruiz in Puebla, MX in 2016 and I am very glad I did. Because I have Progressive MS and I knew going in that HSCT would not repair myelin, I had low expectations, but there was nothing else that could hopefully give me some improvement. I thankfully did receive several good benefits from it. My slow working brain and brain fog was completely eliminated just days after getting my stem cells back. I had increasing overwhelming, debilitating fatigue as the MS progressed and that too was completely eliminated. When I was tired, my speech would get slurred. These things along with a few other things were resolved and have not returned.
Over these past 7 years my mobility has decreased and other symptoms have increased due to the damage that was already done but I have no new symptoms. The care I received at Clinica Ruiz was outstanding and I have no regrets that I went to Puebla and had HSCT. I would like to point out that Dr. Ruiz is a Mayo Clinic alumni and has conducted peer reviewed studies on outpatient protocol for HSCT.
I was diagnosed in 2015 with RRMS, now 8 years and 3 DMTs later, diagnosed with PPMS.
Looking into going to Mexico for HSCT. I have read and heard nothing but promising results. 🙏🏻
Did you get the stem cells?
I have not yet
@@aldeazy1104 Does it reverse symptoms?
I know that you mean well every time you say "let's have some fun", but there's absolutely no fun in MS. A cure would be awesome!
I know what you mean. Maybe I'll think of a new catch phrase.
@@DrBrandonBeaber lol, you're still up? Actually the "having fun" idea may be best, if even for a brief moment? After all, MS is quite scary and depressing. I remember being told not to let MS depress you as that may worsen/increase symptoms, but with MS what's not to be depressed or worried about? The news about MS in my opinion always seems to be about what may or may not be coming around the corner? Every minute is scary. Best regards to you sir!
@@DrBrandonBeaber off topic slightly, but what do you think about Palmer K, she supposedly healed herself/reversed MS?
@@TisEYEthe1 I don't know too much about her story.
@@DrBrandonBeaber Palmer Kippola. She's done many lectures about "Beating Autoimmune diseases" and has done CZcams interviews with the likes of Dr. Wahls and such. It would be quite interesting to get your take on her story. I'm not promoting her, just saying?
Great informative video Doc👏🏻👏🏻👏🏻👏🏻 thank you.
I just passed my one year diagnosis with MS and I've been on Tysabri for over a year . Possibly this could be an option for the future.
I'm glad you enjoyed it. I have video on Tysabri as well if you want to take a look: czcams.com/video/LIKPYQFVNCQ/video.html
Dr. Beaver, thank you for this. Have you had a chance to review the data from Dr. Ruiz in Mexico? The results I have seen show fairly good progress for PPMS.
Did you have HSCT there? I had HSCT at Clinica Ruiz in Puebla in 2016 and I am very glad I did. Because I have Progressive MS and I knew going in that HSCT would not repair myelin, I had low expectations, but there was nothing else that could hopefully give me some improvement. I thankfully did receive several good benefits from it. My slow working brain and brain fog was completely eliminated just days after getting my stem.cells back. I had increasing overwhelming, debilitating fatigue as the MS progressed and that too was completely eliminated. When I was tired, my speech would get slurred. These things along with a few other things were resolved and have not returned.
Over these past 7 years my mobility has decreased and other symptoms have increased due to the damage that was already done but I have no new symptoms. The care I received at Clinica Ruiz was outstanding and I have no regrets that I went to Puebla and had HSCT. I would like to point out that Dr. Ruiz is a Mayo Clinic alumni and has conducted peer reviewed studies on his protocol for outpatient HSCT.
Hi Dr. Beaber, Love your solid review of the research literature. I'm 6 mos post-transplant (aHSCT) and a recent mri showed no signs of active/recent inflammation. Trust that means the secondary progressive m.s. has stopped progressing. and, some improvement of symptoms. Yay & yay!
I wish you would discuss the opportunities for doing HSCT in America. It’s my understanding that it’s not available. What’s the safest way to investigate options abroad?
unbelievable analysis. Thanks for sharing your knowledge. This is worth a lot. THANKS!!
I'm glad it was helpful
Dr. Beaber Thank you for this very interesting and informative video
Why don't we hear of alot of MS patients getting the stem cell transplants?
The risk profile is fairly unfavorable compared to other disease modifying therapies, and HSCT isn't a single treatment with a single pharmaceutical company and accompanying marketing machine behind it.
Any idea if that procedure can cure Behçet’s? And where I can have it done?
Can I get hsct in the usa for ms
Hello
How do you feel about fetal stem cell therapy? I know it's not permanent, but does it works and you don't need chemotherapy. Thanks in advance
If someone takes a lemtrada and develops a cancer, will they not be able to take hstc as a treatment?
Hi again Dr Beaber. May I ask if I can link this video you have done to my MS Channel Anne’s MS Chronicles? I would be most grateful.
As I mentioned to you in your other video (about progression in remitting MS) when you asked me about the conditioning regime, I am an RN and am approached to support people who are newly diagnosed. As I have now sough out this treatment I have had a lot of people approach me about it. my channel is about scientific evidence, but mostly about my journey. i come at it from a nursing and personal perspective. I always think having a very science based video is a good thing. Investigating aHSCT needs to be part of an informed decision making process.
You are absolutely welcome to link the video or use clips of it if you would like.
Dr. Brandon Beaber you are a star!!! Cheers for this. Have a great day (actually, probably night time where you are).
So Dr Beaber would you advise your patients with SPMS to pursue HSCT? I live in Australia and would have to travel overseas at enormous cost....
I can't give you any direct medical advice here. Generally speaking, the evidence for HSCT is mostly for relapsing multiple sclerosis.
Dr. Beaber have you spoken to, or interviewed Dr. Ruiz about his experience practicing HSCT?
Sir thanks for sharing excellent videos regarding MS. What is your opinion regarding MSCT(Mesenchymal stem cells transplant)? I think this does not need high dose immunosuppressive Chemotherapy... Have you made any video regarding this?
I have PPMS and currently using Ocrevous.
I started Alemtuzumab last year, it's going to work🙏🙏🙏 if it doesn't work my neurologist told me to try HSCT !
Neurologists may prescribe early "mini" HSCT, like Mavenclad. Today there are "safe" treatments to reboot the immune system !
It would be interesting to know if HSCT with the conditioning regimen cytoxan + ATG is more effective than Lemtrada. We may never know the answer to this.
What I would like is the use of very high efficacy IRT in early phases of aggressive cases of MS, there are reports with great success in the use of LEMTRADA and Mavenclad as a first line treatment! These treatments work better if EDSS scale is low, stopping MS before permanent damage !
@@DrBrandonBeaber yes..hsct is more effective in stopping lesions and in recovery of function..nobody uses ATG it has toxicities...Rituximab is used in Mexico/Russia....multiplesclerosisnewstoday.com/news-posts/2020/11/10/stem-cell-transplant-more-effective-than-lemtrada-rrms-neda-study/
@@DrBrandonBeaber Why in world do you say "we may never know this" about hsct vs.
alemtuzumab...it is already done.
see "hsct vs. lemtrada ms news today"
@@barbaradascalos4411 I think you are referring to this study which is observational only: jnnp.bmj.com/content/92/2/189 We would need a randomized trial such as this one to draw a confident conclusion: www.mssociety.org.uk/research/explore-our-research/research-we-fund/search-our-research-projects/comparing-treatment-effectiveness-and-safety-in-hsct-lemtrada-and-ocrevus
Hi Dr. Brandon. I’m really considering doing this treatment. I’m in of my begging of my MS. However, I’m concerned about the mortality rate. This the thing I’ve been thinking of all the time. After a lot of research there is people died from HSCT. And there is 2 cases happened in Moscow in 2020 even though the success rate for others was high and changed their life!. I’m thinking to do it in Moscow but Idk about after that date if they got more mortality. From your perspective would you recommend it to me?
I can't give you personal advice here
Very informative !! Could you please Dr, tell me if there is an age limit to undergo hsct is it risky for a 62year old patient thank you very much
Did you have it done? Thank you!!
Hopefully recent events haven't completely derailed the RAM-MS trial to compare HSCT to Lemtrada. If I fail on Lemtrada then I'd be eligible for HSCT on the public health system in my country, but I'm not sure my mother would approve of the 0.5% mortality rate...
I am also curious to see the study results. Out of curiosity, in what country do you live?
@@DrBrandonBeaber United Kingdom, although there are regional differences in the criteria to get HSCT.
Thank you for making sucha great video
The immune system comes back different now what happens to the damaged myelin?
Maybe some gets repaired. But the bigger leasons or black holes will never heal again. But with lots of training, the brain can learn to work better with the remaining brain cells.
Sometimes disability in multiple sclerosis is reversible, but not in all cases.
HSCt is good for multiple sclerosis?
Hi Dr. Beaber, I regularly watch your amazing videos. As a MS sufferer for 10 years, I do not take drugs, but I'm very open to treatment with stem cells derived from donated umbilical cord tissue. Will you comment on this subject?
As far as I know, the only proven "stem cell" treatment in multiple sclerosis hematopoietic stem cell transplant. As I explain in the video, it is the medications (the conditioning regimen) that it is the effective aspect of the treatment. I am not aware of any specific evidence for transplanted umbilical cord cells in MS, though that may change in the future.
I'm also researching this. It's in Panama and it is lead by Dr. Riorden. Could this procedure work without the chemo as they do not use chemo?
@@candacegay2986 did you have it done?
Erm… aHSCT… operative word being ‘autologous’ being the operative word. This means the stem cells must come from the recipient to avoid graft vs host. One from a donor would require the recipient to be on anti rejection drugs forever
@@candacegay2986 no it couldn’t. The chemo is considered the ‘conditioning’ stage. It wipes everything from one’s system. The fatality rate is 30%, and thats just from the toxicity of the chemo. Also have to take into account possible infections etc. the chemo is needed to wipe out one’s immune system to something called ‘day zero’. This is when you have no WBC at all.
Russia and Mexico (under Dr's. Federenko and RUiz) presently favor Rituxan over ATG if I understand correctly.
I would love for you to interview or perhaps review their practices.
Huge gratitude to you Dr. Beaber.
Dr. Burt also told me in an interview that he believes rituximab may reduce the risk of low platelets
Who performs this procedure? There so many institutes outside the USA
No there are very few..Germany..India..Russia..Mexico just search "the country hsct for ms " and you'll get the clinics.
@@barbaradascalos4411 Thank you for your response and I will speak with my neurologist about these findings to see if he thinks this treatment would work for my PPMS....Thanks for the info and btw I subscribed to your channel and hope to continue learning from your videos.
Basically it’s like reinstalling antivirus software.
How does (aHSCT) compare (in Toronto Canada) to Ocrevus in terms of co$t and health insurance eligibility I'm wondering?) . Top level care here has deemed Ocrevus as the only option. For a still fairly spry 58 yr. old with PPMS maybe it's considered too strong?
problem is very few prople with ppms find
hsct works for them..know of group of 10 people who all went to Russia for ppms and kept in touch...turned out none of them had any improvement or halting of progression.
One would have to have a large number of active lesions for it to work in ppms.
Only thing you can try is ocrevus to limit progression.
@@barbaradascalos4411 Thanks Barbara,do you remember where u read this or heard it?
Because I have been finding successful HSCT recipients with PPMS online. What is your source, thanks?
@@ernietollar407 I'm her source
You’re right- I DO approve! Thank you for your thorough explanation about HSCT! Now if only you can get the NMSS to give HSCT (and Dr Burt) the credit they deserve! Best decision I ever made. #nochemonocure #DrBurtismyhero
Same. Dr Burt doesn’t need any credit. His work speaks for himself. The NMSS is actually funded by the pharmaceutical companies
Best decision i ever made!! Went from wheelchair to walking again!! Dr Burt saved my life!!
@@tiffanylilly4209 hi Tiffany
Any update? What was your EDSS before and now. I hope you’re doing great.
Steve
@@FRIGIDBAND I went from 4.5 to 2. Maybe even lower now I don't know. That was 2015 to 2018. I'm off disability and back working. It gave me my life back. Kind of like rewound the clock to how I was when I was first diagnosed in 2002 and my newer issues went away. We are all different so everyone's results vary but with the goal of only stopping decline I was one of the lucky ones to have improvement.
Can hsct help spms?
Yes..especially if one has active lesions..but some w/o lesions stop progression.
How can I get hsct in the u
By going to Mexico....Dr. Ruiz is listed in the top 50 Dr.s who went to Mayo medical school.
Can HSCT cause cancer? Was wondering because some celebrities undergoing stem cells treatment for youth end up having cancer.
Future hematologic cancer is a risk with many of the conditioning regimen agents.
@@DrBrandonBeaber you meqn that other treatments are as cancerogenic as stemm cells?
@@arr2820 It's not the hematopoietic stem cells. The medications (such as cyclophosphamide an BEAM) carry a small but real risk of future cancer.
@@DrBrandonBeaber thanks for the info. I am interested in sharing your videos with my friends. But is it possible to vjew videos with subtitles in russian for example?
@@arr2820 I'm honestly not sure if this is possible.
How much would HSCT cost?
at least 50.000$. On facebook you can find good groups about hsct with lots of informations.
I just got back from Puebla Mexico. I'm 3 months post transplant. It cost $54,500 . Includes food and residency for the 30 days.
@M Nair my insurance didn't because it was out of the country. They do have trials in the US that some insurance will pay for
In russia it is much more cheap.
@@TanyaMarieP hi! How are you doing? What protocol it was?
you ”must„ have relapses if you have MS? my case: im diag with MS for 10 years, but in this time ive never had a relapse or an active lesions on over 20 MRIs, i havent got an active lession on my diag. its okay to think that i dont have MS?
Many people with MS don't have relapses or active lesions, particularly older people with progressive MS or people taking disease modifying therapy to prevent relapses or new lesions. I can't comment on your specific situation. misdiagnosis of MS is unfortunately quite common.
@@DrBrandonBeaber i was on Zynbryta trial/test (2011-2015),then ive been on Betaseron(2015-2019) and Tysabri (2019-now).on tysabri my condition get's worse. From walking without a cane, now i have to use it even for 20 meters walk. My EDSS got from 3.5 in 2020 to 4.5 now
@@DrBrandonBeaber so doest that mean if you dont have relapces and active lesions and you are not old then you have progressive type of ms?
@@arr2820 "Progression" is a clinical term which refers to gradual worsening of symptoms. Some people with relapsing MS are stable (no relapses, no new lesions on MRI, no clinical progression). They don't have progressive MS.
That is only NEDA 3..you need NEDA 4
and normal brain atrophy to be sure there
is no progression.
Sometimes sometimes sometimes! 😬😔
This is NOT a DMD....
The long term stats are still being buildt...