Hi Dr Aaron thank you so much for your valuable videos! It is much appreciated. What is your opinion on taking Mavenclad early in treatment. It seems to be the closest thing that is like HSCT with immune reconstitution. Following this a transition to medium-high medicines. It seems to be able to remove oligoclonal bands long term...
I had HSCT last year in London, refractory RRMS and had previously had five DMTs that didn't prevent me from relapsing every 4 months. My EDSS has gone from 6.5 to 2.5 and I haven't had a relapse in over a year. I had significant foot drop which is gone now and I no longer need an AFO. My only regret is not having HSCT sooner.
I wish I could be allowed this treatment 🙏🏻 I told my neuro I would willingly risk my life for a cure but not to just prolong the inevitable. I have done fairly well with my MS for years, I am now 42 and facing a rapid decline Having lost much of my abilities now most dangerously my ability to swallow, I have prepared my sons for my death. I wish Australia would allow me and my son's this one and only chance 🙏🏻 I am so very glad to hear stories like yours and I hope it is openly offered to those affected in the future. May you continue to shine from this amazing treatment. ☀🌻🙂
❤❤❤❤❤ so happy to hear that you had amazing results, I am waiting to see if they approve me for HSCT in London as well ,so positive to hear you had such great results x All the best to you ,Ana
I did aHSCT in Nov. 2021. I had PPMS, progression very fast. From EDSS 2 in 2017 to EDSS 6,5 in June 2020. Since aHSCT progression has stopped. Even is becoming better. After Rehab and trainig I have EDSS 5 now. Proved by medical center for MS.
Nice to hear that you have improved even though you have progressive multiple sclerosis. Many experts don't recommend autologous stem cell transplant in progressive multiple sclerosis. All the best for future
I went to Mexico for the transplant in ‘21 with PPMS at age 62. The clinic, the doctors and staff were amazing. I wanted to stop the progression, which I feel has happened. And, importantly, it gave me hope, that I wasn’t getting from my neuro. I only wish I had gone years ago.
Never mind. Contacted the clinica Ruiz. FYI: the current cost is $57,500 US Dollars, which must be paid in full two months prior to confirmed date of treatment.
Thank you so very much for this. I was a secretary for the Blood and Marrow Transplant department at University of Minnesota shortly after my MS diagnostic journey began. (2000-2001) Spent some time speaking with researchers at that point about their thoughts on HSCT in regards to Multiple Sclerosis and they were saying the same things you say. "It can work for a limited number of people, but the risks can definitely outweigh the benefits." And that's just the efficacy of treatment without even taking the financial burden in to account! I'm pleased for people who have had success! But, yeah, I'm blessed by the fact that my disease hasn't been severe enough to need to go this route.
I have had MS for 20 years. Basically I think this is a gamble. Like any of the treatments, if you can live with it - great. As for me I will avoid it. I have SPMS but after making adjustments I can live with it. My Neurologist finds that frustrating but it is my body and not his.
I’ve just completed Stage 1, here in the UK part of the StarMS trial! Was very happy to stay on Tysabri, but after 7 years I recently had a big relapse. But otherwise, Tysabri really stopped a lot of progression compared to how active it was prior. Good luck out there everyone!
Over the past few years, my MS has steadily progressed, which my neurologist finally diagnosed as secondary progressive. During that time, Aubagio did little to slow the progress. In order to change to Ocrevus, I took a blood test. It revealed I had an early form of multiple myeloma (MM). Because of this "fortunate" MM diagnosis, I qualified for an aHSCT, which I had in February, at a world-class hospital, under the care of a first-rate oncologist. It's now March, four months post-transplant. Blood-tests show negligible evidence of MS or MM. MRI's show no new lesions. Plus, I feel good. Although I understand the aHSCT did not cure either MS or MM, I trust it has effectively slowed their progress. Thanks Dr. Boster for your honest and informative evaluation of aHSCT.
I had it done in January of 2016 at Northwestern Hospital in Chicago as a part of Dr. Burt's study. Since then, I've had no relapses and no new lesions. RRMS and I was on Aubagio prior to it, and I had success on it, but i couldn't pass this opportunity up. It took my immune system a while to fully grow back (about 4 years), but i was smart, and even through covid, I was diligent and took care of myself. I wish any one of us could get this treatment.
Dx 13 years ago in 2010. HSCT in Puebla Mexico 14 months ago. Reversed 13 years of accumulated symptoms! The care was phenomenal and nothing I have experienced in the US. Glad you're finally speak about! A little extreme on you're aftercare opinion, but maybe you have followed the myleoblative route rather than the non-myleoblative chemo dosage. Patients should go sooner rather than later
Hey! This comment is so helpful and inspiring. I have a few questions! I can ask them here or we could email? Happy for your success! Who was the person and clinic you worked with?
I had hsct in Moscow 2 years ago, no disease activity since then. It was the most professional hospital I have ever been to and the follow up is great, also now, 2 years after I have been there.
I feel great, no disease activity since then. The goal of the treatment is to stop disease progression, not to restore lost functionality of the body, although in many cases also old ms symptoms improve when no inflammatory processes in the central nervous system are there anymore. I got the treatment in the pirogov hospital in Moscow. It cost 45000 euros two years ago and now it's about 50000 euros I think. I was in the very best hands, better than in any hospital in Germany I have ever been to. No need to be afraid.
Just FYI: I contacted Clinical Ruiz in Mexico. Their current cost is $57,500 US Dollars, which must be paid in full two months prior to confirmed date of treatment.
A wonderful video describing this procedure. I give credit to Ocrevus for stabilizing my PPMS. Last I checked I was not a good candidate for HSCT. Then there is the cost. $50-75K. Keep the videos coming. I look forward to the next one.
I switched from gilenya to lemtrada in 2015. From that point, I got progressively worse and I transition to SPMS I did go to Mexico to have HSCT but because of the progression of my disease, things continue to progress. My disease started out very mild, but now my mobility is severely limited. Don’t wait until you get really bad because then it is too late. I had to stop working at 37 because I couldn’t walk well
same with my husband, he has limited mobility, stop walking about 6 years ago, he is 49. He has never had a treatment because we live in Canada and here there is no option of private hospitals, so he was never eligible for any of the newer meds. He is in the hospital recovering of a bad pneumonia that left him with a tracheostomy, he has recovered most of whatever mobility he had but less strengthen.
Very nice video. I had no idea you were involved in the HALT trial. I have also had some patients who did not do well after HSCT (including one of the protagonists in my book, Dr. James Bhat of Chapter 4). However, we may have a biased view in that those who do well may never return to a neurologist. The term "stem cell transplant" is very misleading, and it would be more aptly referred to as "immune system rebooting."
I had 3 courses of Lemtrada, it was a success for 8 years but after my last relapse ,had a 3rd course and didn't work ,I kept getting worse,gpt from workingfull time to barely walkingshort very distances,and usingan electricchair for outings. I am on the list for HSCT now,currently on tysabri..Fingers crossed,good luck to everyone here.. Exercise is very important,wish I would of been more consistent with it while I still could.. Thank you for this great video Aaron
Hey! I hope ur doing ok! I have been on Tysabri very successfully since 2011 and in the past year, my ms has obviously become far more aggressive so I’m on a waiting list to see a professor of neurology MILES away from my home and current treating hospital here in the uk: I’ve been hoping for HSCT for ages but now it’s been mentioned by my own useless neuro, I’m having severe second thoughts… it could lead to a huge increase in breast cancer risk and all the other nasties that may come with it!!! wtf do I do? I said to my old ms nurse about lemtrada but her response was well, there are people that have gone down that path but r now seeking other treatment… I suppose I just have to wait and c what this new guy thinks…!!! I’ve been so happy with my wonder drug since 2011 but because I’ve had no ms nurse to turn to; she’s been on maternity leave 🤷🏻♀️ and I haven’t seen my actual neuro since June 2023…. I’m feeling stuck between a rock and a hard place!!! Help me Jesus!
Will be interesting to see how it compares to fecal microbiota transplant. I almost got into a phase III trial for that a year ago, but became shy of the fact that in order to clear out the microbiome, it required about five different high powered antibiotics simultaneously. I have a family history of anaphylaxis to some antibiotics, so that was an _OH NOOOO_ moment when I learned it. I feel like we are so-close-yet-so-far with an effective treatment or cure for MS.
Thank you for this long awaited video. You are a trusted advisor for so many. Sharing your opinion and knowledge of this is appreciated. The “halt?” trial you mentioned 3 of 4 had decent outcomes. What happened to patient 4?
Thanks for the honest options Dr. Boster. I consider HSTC a last resort because side effects will only be worth it when nothing else works. I am also excited about HSTC's future as it looks promising.
Hey from sunny South Africa, Dr Boster. Looking forward to this talk. Are you able to tell us If multiple sclerosis (MS) progresses beyond a certain stage, is it still possible to undergo stem cell treatment? Thank you SO much for taking the time to give these talks.
Just to point out, this video doesn’t distinguish between Myeloablative aHSCT and NON-Myeloablative. The current BEAT-MS trials in the US are Myeloablative (fully wipes out immune system). Previous trials in Chicago and treatment in Mexico (Puebla and Monterrey) are NON-Myeloablative (doesn’t fully wipe out immune system). NON-Myelo may be somewhat less effective than Myelo, but it’s much safer and your body recovers more quickly.
I wish in the future that health insurance companies with get on board with helping with cost of stem cell therapy . My neurologist thinks it would be a great option for my ms. My insurance company will cover hundreds of thousands for my ocrevus infusions but not for stem cell. Also , many of with this disease are not able to work any longer so it’s not at all affordable for us.
Thank you so much for this video, Dr Boster! ❤ This will help me win the anti-stem cells argument with my boomer parents. 😂 Especially since I'm doing great on Tecfidera alone. 🤷
Hello Dr. Boster, Thank you for talking about MS. I love seeing your videos. I'm Pakistani American living in Chicago. I've had MS since 4/2001. As a Pakistani, I'm not sure how my MS was diagnosed. Back in 2001, I did little research and found this illness was most common in females of the Northern Hemesphire. True or not? O well, I was diagnosed and living with it for past 23 years. It's been an up and down roller coaster with MS. I've lived a wonderful life and still living a great life but there are some tough day.s I've not lost hope in my life with MS. Just the progression to pursue my dreams has slowed down. I underwent Stem Cell Transplant in 2009/2010. It was done by Dr. Burt at Northwestern Hospital. I was in remission for three years and MS returned with a vengeance. It's been bad since 2013 but living through this life with MS Thankful for the life besides MS pains I have. You keep with your informative videos. Thank you. ❤ Fahad
Thanks for the info Dr. B. HSCT seems like a scary endeavor. I recently read a study comparing HSCT to Ocrevus and patients seemed to fare similarly well on Ocrevus. What is your opinion comparing Ocrevus to HSCT? Personally, I'd rather start with Ocrevus and swap to Lemtrada, if necessary, before going with HSCT.
I'd like to know Dr B's opinion when it comes to comparing Ocrevus to HSCT? I've heard of the study comparing HSCT to Ocrevus and patients seemed to fare similarly well on Ocrevus.
Thanks you Dr. Boster for this video. I was diagnosed 7 months ago with RRMS and currently on aubagio. Im seeing my neurologist next week and im planning to talk to her about changing to a b cell depleter (ocrevua or kesimpta). You convinced me that its the right way. Thanks
On Kesimpta one 1/2 years and really like the med & the convenience of it. Husband gives it to me. Happy to not have to go into an infusion center although Ocrevus is great too! Another MRI & neuro visit coming next month so will be happy to see results or no activity praying:) Good luck with either you choose.
I will definitely watch this video. I've been trying to get on a HSCT trial because my neuro told me I need to get a transplant. I'm still waiting for a response. Sent in my form with mri reports, was then told the Dr wanted my actual MRIs to view. Sent those.... crickets. Oh, I called the Boster center but the trials you have don't include HSCT. Do you think you might run some? And.... huge THANKS!!!!
I wish you could make a video on the long-term effect of high efficacy treatment (especially rituximab/ocrelizumab) on disease progression. I know there will only be limited data on ocrelizumab, as it hasn't been on the market for very long (in MS terms). My issue is that when you are diagnosed with MS in 2023, you can go online and read through all this different medical research on both pathology and treatment. In turn this has made me question quite strongly the way we go about treating MS. It seems that the way the disease is split into different subtypes might be wrong, and clearly a lot of data support the notion that the CNS is experiencing high levels of atrophy even in people newly diagnosed with RRMS. I live in a country where we got free healthcare, and the option available is rituximab. If a patient gets breakthrough activity while on rituximab as evidenced by new spots on MRI, alemtuzumab or aHSCT will be considered. My problem is that most patients on rituximab will never have another lesion/attack, and brain volume loss is just not talked about. I've asked for levels of neurofilament light chains etc, but those tests are for some reason not done. So, what do you think the future will look like for a newly diagnosed person (RRMS) in 2023 that is put on rituximab at once and have stable MRIs? Doctors here seem to think everything will be okay. I have difficulties trusting them. I'm seriously considering going abroad for aHSCT unless someone out there can tell me that is a bad choice. (disclaimer - I'm not the person with MS). Sorry for the long post. A video on this would be much appreciated. Love from Scandinavia.
That’s the few things people who push aHSCT don’t mention. Long period of isolation to not get infections (extremely difficult if you have a family) no work for weeks to months, long recovery time, infertility. These are pretty significant IMO risks vs the high efficacy DMTs
The first phase was mobilisation and collection, I wasn't an inpatient for any of that, it was all done in a day unit or at home. For phase 2 I was in hospital from March 1st to March 25th, so not in hospital for months. I didn't have to lock myself up for months, just had to be sensible, wearing a mask when out and about. My teenaged daughter was going to school everyday and coming home, I didn't avoid her. I had covid about 6 months post HSCT and I was fine. I haven't had endless infections..... This idea that you have to go to ground for months afterwards just isn't accurate.
A few months of isolation for potentially a lifetime of disease free remission (plenty of cases with people 20 years out and doing great). Long term vision my friend ❤
I have to take Lemtrada next month. I got no idea how I will feel or how long I will feel rubbish. I rejected HSCT. I only rejected it because i rather have some conclusive evidence rather than jumping into the frame as a subject.
Thank you, Dr Boster, for this video. I appreciate the information that you provide. Taking low dose Naltrexone and it has helped with the brain storms. Baclofen only does so much. The spasticity and the pins and needles are maddening. I'm just about willing to try botox to make it stop. Today is a bad day. I just wish it would stop.
I can vouch for the LDN, at least for 4-5 years. Lately it stopped working, so I'm taking a break and hoping it'll work again later. At least it's inexpensive and harmless.
Hi Dr Aaron thank you so much for your valuable videos! It is much appreciated. What is your opinion on taking Mavenclad early in treatment. It seems to be the closest thing that is like HSCT with immune reconstitution. Following this a transition to medium-high medicines. It seems to be able to remove oligoclonal bands long term...
Yes, if and where they were to use the same antiviral approach for MS as they do for HIV, I imagine the viral effects of EBV and other viruses could be quite helpful in quieting disease progression.
For me, aHSCT was on the table as a last resort. My PPMS had continued to progress after I started Ocrevus. Then came covid. It was off the table for the foreseeable future, as nobody knew anything about how the world, let alone MS patients, would be affected. Over the next two years, I was approved for a five month interval between infusions, and I've had no new lesions, and only two very mild "attacks". I did lose the ability to walk for several weeks, coinciding with a covid booster, but we have no idea if that was related at all. I've since recovered, and I am once again able to walk, and without a walking stick most of the time. Inclines are still a bitch. As I type this, I am a week out from my next infusion, and surprisingly, still doing well, as I have continued to have the crud pop up, just not as bad, and not nearly as far out. The day after my infusion, I'm stepping off on a months long trip in my new travel trailer, something that was shelved when I first got my diagnosis. PSA for patients on Ocrevus specifically, if you get the crud before your next infusion, and I'm talking weeks out, insist that your neurologist draw blood and test for presence of B-cells. I kept insisting that the Ocrevus was wearing off, and my doctor eventually did test me, and found a sufficiently elevated level of B-cells. I was then approved for a five month schedule. The Ovrevus rep I have been speaking with since the beginning, told me that they will approve a four month regimen if necessary. I can live with a week or two of memory slips and longer than expected periods of sleep, so for now at least, the five month schedule is fine for me. I haven't watched all of Doctor Boster's videos, and perhaps he has already addressed that. If not, maybe he can give us his perspective on that, and how it may relate to the other big DMTs used to treat MS.
Such a detailed explanation! Love it. Thank you for explaining exactly how this works. Easy to understand for the multitudes. #DrBosterRocks #StrongerTogether #MavencladMilf
@@lararose9106 Hi, while getting an Infusion with Ocrelizumab I had no sideeffects or problems. The infusion took I think 6 hours - very slow. Half hour before infusion I got infusion with kind of cortison/steroid and antiallergicpills. The following night I could hardly sleep. Maybe the cortison? The weeks after Infusion I feelt a bit more tired but no increase of infektions. I hope this answer is helpfull to you.
There are so many stem cells in capsule being introduced on line and claimed to be effective treatment for ms, do you think this is true. I’ m your new subscriber here in the philippines.
Thank you Dr Aaron for an excellent Monday morning video. I have the utmost respect for your opinion on this procedure, in my mind I would have to say your right and lemtrada sounds like a great deal compared to having to travel a distance and spent Buka money for a procedure that is still pretty risky. That's just my opinion because like you I'm opinionated. Have a great day sir and as always thank you for everything you do
Yes it can. And it is a shame that the Neurologist community worldwide is not pushing it and prefer to push shitty medicines for lifetime. They argue that it is too dangerous blablabla, but it should be the patient's choice to risk his life how he wants. Anyway, death risk is now about 0.2% for non-myelo, it is even less than risk with Ocrevus which is about 0.3 when we take into account cancer-related risks...
Dr. Boater, I would be concerned that I would have a period of no symptoms or pains only to be hit head on when I least expect it. Then, I have to adjust all over again.
Afternoon Sir,🏴🏴 your posts are simply awesome and actually can understand the medical jargon. Q! Since 2015 I got Guillain Barre Syndrome and recently MMNCB these symptoms nearly run parallel with MS . My Spine Doctor has done brain cervical thoracic MRI awaiting results. Lumber MRI L4/L5 multilevel degenerative retrothlesis with modic changes L5/S1 spine nerve impingement Also I have MGUS Sorry medical Professionals but moan,had rough time with couple neurological Drs. Believe my current Super DR is looking for MS or Myeloma Done ivig treatment 4 cycles zero change Q can ivig effect plasma toxicity in Myeloma or MS Regards Kev 🏴☕️
Thank you Dr. Boster for your awesome videos. I was diagnosed in 99, I struggled with my dr to switch me to Tysapri in 2004 but he refused because I was doing “fine” and left me on Avonex. I gave up in 22 and went to Clinica Ruiz for aHSCT. I think it was good for me, however, three weeks ago I woke up with a problem in my bladder and legs. The MRI didn’t show new lesions, however, I don’t think relapses have to show in the brain especially since I had the disease for more than 24 years? My thinking now is to push for Mavenclad since I believe it does have a similar mechanism to Ahsct, what do you think of that idea?
Would you recommend aHSCT as a treatment for someone recently diagnosed who is feeling a lot of MS symptoms even with Ocrevus? Why not recommend aHSCT as a treatment early in this disease?
@@lararose9106 hi lara i'd like to offer my own experience and hope it will help! i was in the same situation as you, unsure of ANY dmts cause all the side effects freaked me out. it took about three neurologists until one of them finally told me i should be on ocrevus asap and i had asked all my concerns and decided to go forward with it. i found out no PML has been reported so far which is a really huge thing (i'm JCV+ which is why i can't take that other dmt) and it appears to me they have to say it COULD potentially cause it since there is that slight possibility and they don't want a lawsuit. though considering how many years ocrevus has been out and no one has reported any PML stuff directly caused by ocrevus, it's either non-existent or EXTREMELY rare. with the whole breast cancer stuff (which also freaked me out to high hell) apparently like only 1-3 of the women who were in the test trials developed breast cancer BUT there was no links to it being caused by ocrevus. also i was told they have to say it could cause cancers even though technically there is really no difference between your normal probability whether you're on ocrevus or not. they are just required to report it could cause it, again, i assume to cover their asses just in case someone tried to sue for that. though despite suffering since the end of 2019, multiple doctors, i got my first real dose last year. i honestly didn't feel much different after. still felt blah. i had an acute allergic reaction which they told me to let them know next infusion.(since first dose is done in 2 parts, half and half to monitor) though for the most part, i was asleep the entire time. then my most recent dose (beginning of the year) after i did feel A LOT better, more energy, less fatigued. and i physically felt better than i've felt in years. while i did have another acute allergic reaction (throat felt sore/swollen) the nurses made sure i was totally ok and felt completely fine (no sore throat) before leaving. they also DO make sure everyone has allergy pills before infusion to avoid that stuff, but in my case i need an iv for it. though passed out again for mostly all of it! i will say as of right now i haven't been feeling as great since my next infusion is next month. i do notice at least ~2 months before each infusion i feel some of my previous symptoms more frequently and don't feel as great though it makes sense (they tell you that you might feel this way) since pretty sure it's just the b cells coming back. i've personally experienced NO new symptoms from ocrevus that i didn't experience before honestly. i get vertigo, migraines, and sometimes numbness in arms and legs but these were also the first symptoms i ever showed which led me to my MS diagnosis so i can't really say if it was from the ocrevus or not considering i've been dealing with it long before! i don't know if i'm lucky or not that my symptoms haven't gotten worse, but they really haven't gotten better. they tend to be less frequent but still the same intensity. i also can't say i've relapsed though i think my disease progression has been quite slow to start with considering my first mri in 2021 vs one i had before starting ocrevus in 2022 was hardly different (yippie!) i understand being very scared to take any of the dmts since they really are terrifying on paper and to put in your body, but please consider looking into some dmt options cause what's even worse is letting your disease progress further when you could of slowed it considerably. best wishes for you and i really hope you start feeling better, you're too young to be feeling this bad! 😢 sorry for any typos i'm typing this at like 1 am and here i am breaking one the MS golden rules of getting good sleep 😂
What is the procedure that you think is possible much safer? Will you please write it down? I don't think I understand it's name / title correctly - limitrada? Best Regards
cause the risks really aren't worth it for someone who has had success with their current medications/aren't deteriorating rapidly. this is basically hard resetting your immune system and the treatment itself AND recovery are EXTREMELY grueling. it really should be a last resort after you've exhausted all other options. also it has a pretty hefty price tag for something that could potentially not work/kill you.
Can you Dr B or anyone that has had HSCT please tell me what is the status of fatigue once you get the HSCT? Is it expected to be the same, little better or back to normap fatigue wise? I know its snowflake disease, I'm just needing to know everyones experience
Dr. Boster, It’s it correct that if you take some DMT’s you no longer are a candidate for HSCT? From my MS Neurologist the meds, if taken, will eliminate you for HSCT: -LEMTRADA -Mavenclad I don’t remember if there were others. Please respond to let our ms fam know, your opinion😊
I know with one trial you will need to be off certain DMTs. So, like for me, I need to be off tysabri for 5 months before transplant, same with ocrelizumab, alemtuzameb is 12 months free, tecfidera 3 Mos free. HTH with a little bit of your question.
@lararose9106 hey. Sorry just saw this. Um, the only side effect from tecfidera was that I had bad flushing the first day. I really focused on the tips they gave when you take pill. Other than the 1st day no other issues. I have not used ocrevus. I am on tysabri. My side effects are tiredness after infusion for first few days to week after. I have joint pain from it in my hips I haven't heard back from the trial. I think I am going to hold off now. Have you decided on doing a dmt?
You have not mentioned the cost of SCT, It would cost me upwards of $100,00k for such a procedure. In Australia there is no therapy for PPMS with my age and the aggressiveness of my disease. I have however found my own natural supplement cocktail to slow it down. and yes I drink, and I smoke. At this point I ask the question, is it bad for my health?
@@freethinkeralwayshi! I’m in the uk, and my ms has gotten really really bad since I tried the Tysabri injections! I’ve done a little research and found that lions mane supplements can help with remylination, I take a very high concentration of vitamin D, fish oil capsules and turmeric capsules; all are anti inflammatory apparently! I’ve been feeling better since starting all these but I’m yet to have my next loathsome mri! Good luck! 🤞🏻 ms is a cow!!!
Hey Dr Boster. Thank you for this valuable information and your perspective. Are you able to indicate if Lemtrada is an option for ALL forms of MS or only only RRMS?
I’m just 2 weeks into figuring out that I may have MS. I’m waiting for an appointment. What causes lesions on the brain? Could it be a trauma? I’ve had over 50 ECT’s, could this be a cause?
Do you have recent information on treatments for leukodystrophy? I know HSCTis being used. I was diagnosed and waiting until February for potential treatments. leukodystrophy and MS might be similar
I'm currently in the process of getting myeloblative AHSCT. This is my "rest week". I've already done mobilization. Next week I get hit with the hard chemotherapy and get back my stem cells the week after. I failed Tysabri and Lemtrada and have aggressive MS especially to my lower spinal cord. T7-12
Hi Dr Boster, you’re 🔥btw 😃 I’ve just been watching a 2yr old vid you made about brain MRI and really need to ask a question relating to my latest relapse scan. I have a new lesion in my “Left Basal Ganglia” & I can’t get an answer on what that may affect in my body. I know that’s Parkinson’s attacks that region so would MS symptoms perhaps mimic symptoms of that? I did have a shake in my right arm during the relapse and found standing still felt weird while moving felt ok?. weird. I believe the mid brain tends to affect contralaterally? Ie the opposite side to lesion? Can you shed any more light on MS lesions in the Basal Ganglia please? Thank you Rachel x
My dr.is confused if I have MS or I Don’t. He kept me for 2 years in medication #zeposia, now he says latest MRI showed it’s not MS but I have the Symptoms , Any thoughts please?
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Hi Dr Aaron thank you so much for your valuable videos! It is much appreciated. What is your opinion on taking Mavenclad early in treatment. It seems to be the closest thing that is like HSCT with immune reconstitution. Following this a transition to medium-high medicines. It seems to be able to remove oligoclonal bands long term...
I had HSCT last year in London, refractory RRMS and had previously had five DMTs that didn't prevent me from relapsing every 4 months. My EDSS has gone from 6.5 to 2.5 and I haven't had a relapse in over a year. I had significant foot drop which is gone now and I no longer need an AFO. My only regret is not having HSCT sooner.
🧡
wow that’s so amazing!
I wish I could be allowed this treatment 🙏🏻
I told my neuro I would willingly risk my life for a cure but not to just prolong the inevitable.
I have done fairly well with my MS for years, I am now 42 and facing a rapid decline
Having lost much of my abilities now most dangerously my ability to swallow, I have prepared my sons for my death. I wish Australia would allow me and my son's this one and only chance 🙏🏻
I am so very glad to hear stories like yours and I hope it is openly offered to those affected in the future.
May you continue to shine from this amazing treatment. ☀🌻🙂
One of the medications I had was alemtuzumab, it didn't keep my MS at bay and I also had to have a full thyroidectomy because of it.
❤❤❤❤❤ so happy to hear that you had amazing results, I am waiting to see if they approve me for HSCT in London as well ,so positive to hear you had such great results x
All the best to you ,Ana
I did aHSCT in Nov. 2021. I had PPMS, progression very fast. From EDSS 2 in 2017 to EDSS 6,5 in June 2020. Since aHSCT progression has stopped. Even is becoming better. After Rehab and trainig I have EDSS 5 now. Proved by medical center for MS.
Nice to hear that you have improved even though you have progressive multiple sclerosis. Many experts don't recommend autologous stem cell transplant in progressive multiple sclerosis. All the best for future
In what country did u do HSCT ?? and how much did u pay ? If u don't mind me asking ...( PS: I'm not from the USA )
What was the cost in Mexico
How you doing now?
I went to Mexico for the transplant in ‘21 with PPMS at age 62. The clinic, the doctors and staff were amazing. I wanted to stop the progression, which I feel has happened. And, importantly, it gave me hope, that I wasn’t getting from my neuro. I only wish I had gone years ago.
Thank you! I'm considering going to Mexico as well. Did you do it in Clinica Ruiz? May I please ask: what was the cost?
Never mind. Contacted the clinica Ruiz. FYI: the current cost is $57,500 US Dollars, which must be paid in full two months prior to confirmed date of treatment.
AWESOME. Good for you.
@@freethinkeralways That's the common cost.
What type of stem cell did you have? Thank you!!
Thank you so very much for this. I was a secretary for the Blood and Marrow Transplant department at University of Minnesota shortly after my MS diagnostic journey began. (2000-2001) Spent some time speaking with researchers at that point about their thoughts on HSCT in regards to Multiple Sclerosis and they were saying the same things you say. "It can work for a limited number of people, but the risks can definitely outweigh the benefits." And that's just the efficacy of treatment without even taking the financial burden in to account! I'm pleased for people who have had success! But, yeah, I'm blessed by the fact that my disease hasn't been severe enough to need to go this route.
I have had MS for 20 years. Basically I think this is a gamble. Like any of the treatments, if you can live with it - great. As for me I will avoid it. I have SPMS but after making adjustments I can live with it. My Neurologist finds that frustrating but it is my body and not his.
I had an HSCT for RRMS with Dr. Burt in Chicago and it saved my life 🙏🏻
Do you know where hes located at now? Thanks
@trenttimmer3256 So did I! January 2016 for me.
My wife had HSCT at Clinic Ruiz, Puebla in 2017. Every mri since has shown no new or enhancing lesions. 👍
I’ve just completed Stage 1, here in the UK part of the StarMS trial!
Was very happy to stay on Tysabri, but after 7 years I recently had a big relapse. But otherwise, Tysabri really stopped a lot of progression compared to how active it was prior.
Good luck out there everyone!
I’m on the Star MS trial too - but I got the drug arm 😢
@@Terricharmedackles ahh I’m sorry to hear that Terri, do you know which drug you are going with? And what were you on previously?
how are you doing now? Any updates?
Over the past few years, my MS has steadily progressed, which my neurologist finally diagnosed as secondary progressive. During that time, Aubagio did little to slow the progress. In order to change to Ocrevus, I took a blood test. It revealed I had an early form of multiple myeloma (MM). Because of this "fortunate" MM diagnosis, I qualified for an aHSCT, which I had in February, at a world-class hospital, under the care of a first-rate oncologist. It's now March, four months post-transplant. Blood-tests show negligible evidence of MS or MM. MRI's show no new lesions. Plus, I feel good. Although I understand the aHSCT did not cure either MS or MM, I trust it has effectively slowed their progress.
Thanks Dr. Boster for your honest and informative evaluation of aHSCT.
I had it done in January of 2016 at Northwestern Hospital in Chicago as a part of Dr. Burt's study. Since then, I've had no relapses and no new lesions. RRMS and I was on Aubagio prior to it, and I had success on it, but i couldn't pass this opportunity up. It took my immune system a while to fully grow back (about 4 years), but i was smart, and even through covid, I was diligent and took care of myself.
I wish any one of us could get this treatment.
Dx 13 years ago in 2010. HSCT in Puebla Mexico 14 months ago. Reversed 13 years of accumulated symptoms! The care was phenomenal and nothing I have experienced in the US. Glad you're finally speak about! A little extreme on you're aftercare opinion, but maybe you have followed the myleoblative route rather than the non-myleoblative chemo dosage. Patients should go sooner rather than later
Hey! This comment is so helpful and inspiring. I have a few questions! I can ask them here or we could email? Happy for your success! Who was the person and clinic you worked with?
You are an innovator Aaron. Always fighting the good fight for us MS sufferers. Thank you doctor Boster 👍
Cracks me up when you say (and point) “thanks for learning with ME!”
I had hsct in Moscow 2 years ago, no disease activity since then. It was the most professional hospital I have ever been to and the follow up is great, also now, 2 years after I have been there.
Hows your feeling right now and how much it is cost?
Thank you! What clinic in Moscow? How much did your whole experience cost?
How u filing now I'm diagnosed with MS in 2014 I'm getting worse I'm scared to do it and how much it cost u thanks
I feel great, no disease activity since then. The goal of the treatment is to stop disease progression, not to restore lost functionality of the body, although in many cases also old ms symptoms improve when no inflammatory processes in the central nervous system are there anymore. I got the treatment in the pirogov hospital in Moscow. It cost 45000 euros two years ago and now it's about 50000 euros I think. I was in the very best hands, better than in any hospital in Germany I have ever been to. No need to be afraid.
Just FYI: I contacted Clinical Ruiz in Mexico. Their current cost is $57,500 US Dollars, which must be paid in full two months prior to confirmed date of treatment.
A wonderful video describing this procedure. I give credit to Ocrevus for stabilizing my PPMS. Last I checked I was not a good candidate for HSCT. Then there is the cost. $50-75K. Keep the videos coming. I look forward to the next one.
Too expensive and too scary 😦. Thank for defining this process. Obviously not a process for most.
I switched from gilenya to lemtrada in 2015. From that point, I got progressively worse and I transition to SPMS I did go to Mexico to have HSCT but because of the progression of my disease, things continue to progress. My disease started out very mild, but now my mobility is severely limited. Don’t wait until you get really bad because then it is too late. I had to stop working at 37 because I couldn’t walk well
same with my husband, he has limited mobility, stop walking about 6 years ago, he is 49. He has never had a treatment because we live in Canada and here there is no option of private hospitals, so he was never eligible for any of the newer meds. He is in the hospital recovering of a bad pneumonia that left him with a tracheostomy, he has recovered most of whatever mobility he had but less strengthen.
Did you rebound from Gilenya?
Very nice video. I had no idea you were involved in the HALT trial. I have also had some patients who did not do well after HSCT (including one of the protagonists in my book, Dr. James Bhat of Chapter 4). However, we may have a biased view in that those who do well may never return to a neurologist. The term "stem cell transplant" is very misleading, and it would be more aptly referred to as "immune system rebooting."
Agreed, I think of it as a "hard reboot."
I had HSCT in June 2018 in Moscow, Russia.
2 MRIs since with no new lesions. 🙂
Right now I am doing physical therapy.
Hi how are you any update did you have an Instagram or Snapchat?
I had 3 courses of Lemtrada, it was a success for 8 years but after my last relapse ,had a 3rd course and didn't work ,I kept getting worse,gpt from workingfull time to barely walkingshort very distances,and usingan electricchair for outings.
I am on the list for HSCT now,currently on tysabri..Fingers crossed,good luck to everyone here..
Exercise is very important,wish I would of been more consistent with it while I still could..
Thank you for this great video Aaron
Hey! I hope ur doing ok! I have been on Tysabri very successfully since 2011 and in the past year, my ms has obviously become far more aggressive so I’m on a waiting list to see a professor of neurology MILES away from my home and current treating hospital here in the uk: I’ve been hoping for HSCT for ages but now it’s been mentioned by my own useless neuro, I’m having severe second thoughts… it could lead to a huge increase in breast cancer risk and all the other nasties that may come with it!!! wtf do I do? I said to my old ms nurse about lemtrada but her response was well, there are people that have gone down that path but r now seeking other treatment… I suppose I just have to wait and c what this new guy thinks…!!! I’ve been so happy with my wonder drug since 2011 but because I’ve had no ms nurse to turn to; she’s been on maternity leave 🤷🏻♀️ and I haven’t seen my actual neuro since June 2023…. I’m feeling stuck between a rock and a hard place!!! Help me Jesus!
Thanks for breaking this down! It's always fascinating to me to hear the WHOLE process.
Thank you Dr. H! I appreciate you and your RUclips content is AMAZING these days. Your shorts are phenomenal! #StrongerTogether #WeHaveMS
Will be interesting to see how it compares to fecal microbiota transplant. I almost got into a phase III trial for that a year ago, but became shy of the fact that in order to clear out the microbiome, it required about five different high powered antibiotics simultaneously. I have a family history of anaphylaxis to some antibiotics, so that was an _OH NOOOO_ moment when I learned it.
I feel like we are so-close-yet-so-far with an effective treatment or cure for MS.
I’m interested if FMT, but I can’t find anyone near me, Nashville.
So glad you discussed this topic that I think about daily. Great video again, Doc 😊
Thank you for the Monday morning video. At 66 I will consider stem cell transplant for my next ms life. Doug coffee in hand from Lyndhurst Ohio.
Thank you for this long awaited video. You are a trusted advisor for so many. Sharing your opinion and knowledge of this is appreciated. The “halt?” trial you mentioned 3 of 4 had decent outcomes. What happened to patient 4?
Thanks for the honest options Dr. Boster. I consider HSTC a last resort because side effects will only be worth it when nothing else works. I am also excited about HSTC's future as it looks promising.
Hey from sunny South Africa, Dr Boster. Looking forward to this talk. Are you able to tell us If multiple sclerosis (MS) progresses beyond a certain stage, is it still possible to undergo stem cell treatment? Thank you SO much for taking the time to give these talks.
#WeHaveMS
You should sometime make a video with all the reachers MS Doctors .
Thank you Dr. Boster for such informative material
You are the MVP in MS arena
Greetings from Saudi Arabia
Glad it was helpful!
Thank you Dr Boster, informative and thought provoking as always! 🔥🔥🔥🔥🔥
Much appreciated
Just to point out, this video doesn’t distinguish between Myeloablative aHSCT and NON-Myeloablative. The current BEAT-MS trials in the US are Myeloablative (fully wipes out immune system). Previous trials in Chicago and treatment in Mexico (Puebla and Monterrey) are NON-Myeloablative (doesn’t fully wipe out immune system). NON-Myelo may be somewhat less effective than Myelo, but it’s much safer and your body recovers more quickly.
As always, thanks for your highly considerate video, Dr. Boster! 👍❤️
Glad you like them!
I wish in the future that health insurance companies with get on board with helping with cost of stem cell therapy . My neurologist thinks it would be a great option for my ms. My insurance company will cover hundreds of thousands for my ocrevus infusions but not for stem cell. Also , many of with this disease are not able to work any longer so it’s not at all affordable for us.
Thank you again for providing a very well informed base on which we all can decide what is the best avenue of treatment for MS.
Thank you so much for this video, Dr Boster! ❤ This will help me win the anti-stem cells argument with my boomer parents. 😂 Especially since I'm doing great on Tecfidera alone. 🤷
Excellent!
Hello Dr. Boster,
Thank you for talking about MS. I love seeing your videos. I'm Pakistani American living in Chicago.
I've had MS since 4/2001. As a Pakistani, I'm not sure how my MS was diagnosed. Back in 2001, I did little research and found this illness was most common in females of the Northern Hemesphire. True or not?
O well, I was diagnosed and living with it for past 23 years.
It's been an up and down roller coaster with MS.
I've lived a wonderful life and still living a great life but there are some tough day.s
I've not lost hope in my life with MS.
Just the progression to pursue my dreams has slowed down.
I underwent Stem Cell Transplant in 2009/2010. It was done by Dr. Burt at Northwestern Hospital.
I was in remission for three years and MS returned with a vengeance.
It's been bad since 2013 but living through this life with MS
Thankful for the life besides MS pains I have.
You keep with your informative videos.
Thank you.
❤
Fahad
Thanks for the info Dr. B. HSCT seems like a scary endeavor. I recently read a study comparing HSCT to Ocrevus and patients seemed to fare similarly well on Ocrevus. What is your opinion comparing Ocrevus to HSCT? Personally, I'd rather start with Ocrevus and swap to Lemtrada, if necessary, before going with HSCT.
I'd like to know Dr B's opinion when it comes to comparing Ocrevus to HSCT? I've heard of the study comparing HSCT to Ocrevus and patients seemed to fare similarly well on Ocrevus.
Thanks you Dr. Boster for this video. I was diagnosed 7 months ago with RRMS and currently on aubagio. Im seeing my neurologist next week and im planning to talk to her about changing to a b cell depleter (ocrevua or kesimpta). You convinced me that its the right way. Thanks
Glad it was helpful!
On Kesimpta one 1/2 years and really like the med & the convenience of it. Husband gives it to me. Happy to not have to go into an infusion center although Ocrevus is great too! Another MRI & neuro visit coming next month so will be happy to see results or no activity praying:) Good luck with either you choose.
@@colleensmith3374 Thanks for sharing. I hope that MRI results turn out great. My god be with you.
I’ve been waiting to hear about this from you. 😊
I will definitely watch this video. I've been trying to get on a HSCT trial because my neuro told me I need to get a transplant.
I'm still waiting for a response. Sent in my form with mri reports, was then told the Dr wanted my actual MRIs to view. Sent those.... crickets.
Oh, I called the Boster center but the trials you have don't include HSCT. Do you think you might run some?
And.... huge THANKS!!!!
#WeHaveMS
Thank you for explaining the procedure I have always wanted to know the details of the procedure.
You are welcome!
I wish you could make a video on the long-term effect of high efficacy treatment (especially rituximab/ocrelizumab) on disease progression. I know there will only be limited data on ocrelizumab, as it hasn't been on the market for very long (in MS terms). My issue is that when you are diagnosed with MS in 2023, you can go online and read through all this different medical research on both pathology and treatment. In turn this has made me question quite strongly the way we go about treating MS. It seems that the way the disease is split into different subtypes might be wrong, and clearly a lot of data support the notion that the CNS is experiencing high levels of atrophy even in people newly diagnosed with RRMS. I live in a country where we got free healthcare, and the option available is rituximab. If a patient gets breakthrough activity while on rituximab as evidenced by new spots on MRI, alemtuzumab or aHSCT will be considered. My problem is that most patients on rituximab will never have another lesion/attack, and brain volume loss is just not talked about. I've asked for levels of neurofilament light chains etc, but those tests are for some reason not done. So, what do you think the future will look like for a newly diagnosed person (RRMS) in 2023 that is put on rituximab at once and have stable MRIs? Doctors here seem to think everything will be okay. I have difficulties trusting them. I'm seriously considering going abroad for aHSCT unless someone out there can tell me that is a bad choice. (disclaimer - I'm not the person with MS). Sorry for the long post. A video on this would be much appreciated. Love from Scandinavia.
Doing Alemtuzumab early after diagnosis is like a small HSCT !! Keep on the good work !! Let's be hard on MS !!
That’s the few things people who push aHSCT don’t mention. Long period of isolation to not get infections (extremely difficult if you have a family) no work for weeks to months, long recovery time, infertility. These are pretty significant IMO risks vs the high efficacy DMTs
The first phase was mobilisation and collection, I wasn't an inpatient for any of that, it was all done in a day unit or at home. For phase 2 I was in hospital from March 1st to March 25th, so not in hospital for months. I didn't have to lock myself up for months, just had to be sensible, wearing a mask when out and about. My teenaged daughter was going to school everyday and coming home, I didn't avoid her. I had covid about 6 months post HSCT and I was fine. I haven't had endless infections..... This idea that you have to go to ground for months afterwards just isn't accurate.
A few months of isolation for potentially a lifetime of disease free remission (plenty of cases with people 20 years out and doing great). Long term vision my friend ❤
I have to take Lemtrada next month. I got no idea how I will feel or how long I will feel rubbish.
I rejected HSCT. I only rejected it because i rather have some conclusive evidence rather than jumping into the frame as a subject.
Thank you, Dr Boster, for this video. I appreciate the information that you provide.
Taking low dose Naltrexone and it has helped with the brain storms. Baclofen only does so much. The spasticity and the pins and needles are maddening. I'm just about willing to try botox to make it stop.
Today is a bad day. I just wish it would stop.
I can vouch for the LDN, at least for 4-5 years. Lately it stopped working, so I'm taking a break and hoping it'll work again later. At least it's inexpensive and harmless.
Hi Dr Aaron thank you so much for your valuable videos! It is much appreciated. What is your opinion on taking Mavenclad early in treatment. It seems to be the closest thing that is like HSCT with immune reconstitution. Following this a transition to medium-high medicines. It seems to be able to remove oligoclonal bands long term...
Good morning Dr. B! 🔥🔥🔥🔥🔥
Morning!
Thank you so much for your work here on YT!!!
Welcome!
thank you for sharing your opinion!
Of course!!
Thanks for explaining why you favour Lemtrada over HSCT. What about adding an antiviral to quiet EBV?
Yes, if and where they were to use the same antiviral approach for MS as they do for HIV, I imagine the viral effects of EBV and other viruses could be quite helpful in quieting disease progression.
For me, aHSCT was on the table as a last resort. My PPMS had continued to progress after I started Ocrevus. Then came covid. It was off the table for the foreseeable future, as nobody knew anything about how the world, let alone MS patients, would be affected. Over the next two years, I was approved for a five month interval between infusions, and I've had no new lesions, and only two very mild "attacks". I did lose the ability to walk for several weeks, coinciding with a covid booster, but we have no idea if that was related at all. I've since recovered, and I am once again able to walk, and without a walking stick most of the time. Inclines are still a bitch. As I type this, I am a week out from my next infusion, and surprisingly, still doing well, as I have continued to have the crud pop up, just not as bad, and not nearly as far out. The day after my infusion, I'm stepping off on a months long trip in my new travel trailer, something that was shelved when I first got my diagnosis.
PSA for patients on Ocrevus specifically, if you get the crud before your next infusion, and I'm talking weeks out, insist that your neurologist draw blood and test for presence of B-cells. I kept insisting that the Ocrevus was wearing off, and my doctor eventually did test me, and found a sufficiently elevated level of B-cells. I was then approved for a five month schedule. The Ovrevus rep I have been speaking with since the beginning, told me that they will approve a four month regimen if necessary. I can live with a week or two of memory slips and longer than expected periods of sleep, so for now at least, the five month schedule is fine for me.
I haven't watched all of Doctor Boster's videos, and perhaps he has already addressed that. If not, maybe he can give us his perspective on that, and how it may relate to the other big DMTs used to treat MS.
Looking forward to hearing your thoughts on this.
#StrongerTogether
Such a detailed explanation!
Love it.
Thank you for explaining exactly how this works.
Easy to understand for the multitudes.
#DrBosterRocks
#StrongerTogether
#MavencladMilf
I figured Lemtrada was like a mini Safer HSCT
Ooooh I can’t stand quacks and charletans!
Keep us safe Doc
Before aHSCT doctors tried Mitoxantrone and Ocrevus/Ocrelizumab. Mitoxantrone did help a bit to reduce progression. Ocrelizumab did not help at all.
@@lararose9106 Hi, while getting an Infusion with Ocrelizumab I had no sideeffects or problems. The infusion took I think 6 hours - very slow. Half hour before infusion I got infusion with kind of cortison/steroid and antiallergicpills.
The following night I could hardly sleep. Maybe the cortison? The weeks after Infusion I feelt a bit more tired but no increase of infektions.
I hope this answer is helpfull to you.
There are so many stem cells in capsule being introduced on line and claimed to be effective treatment for ms, do you think this is true. I’ m your new subscriber here in the philippines.
No ! My dad has gone through stem cell transplant n no improvement! I hope one day doc will come up with 💯 cure
Helpful video thanks Dr B. I feel this is where I’m heading IF lemtrada fails me 😟
You got this!
Thank you Dr Aaron for an excellent Monday morning video. I have the utmost respect for your opinion on this procedure, in my mind I would have to say your right and lemtrada sounds like a great deal compared to having to travel a distance and spent Buka money for a procedure that is still pretty risky. That's just my opinion because like you I'm opinionated. Have a great day sir and as always thank you for everything you do
Thank you Dr for this great video and advise
Glad it was helpful!
Good Day Sir, Very interesting video.. Thank you for sharing....mjm
Thank you too
Yes it can. And it is a shame that the Neurologist community worldwide is not pushing it and prefer to push shitty medicines for lifetime. They argue that it is too dangerous blablabla, but it should be the patient's choice to risk his life how he wants.
Anyway, death risk is now about 0.2% for non-myelo, it is even less than risk with Ocrevus which is about 0.3 when we take into account cancer-related risks...
Dr. Boater,
I would be concerned that I would have a period of no symptoms or pains only to be hit head on when I least expect it. Then, I have to adjust all over again.
Afternoon Sir,🏴🏴 your posts are simply awesome and actually can understand the medical jargon.
Q! Since 2015 I got Guillain Barre Syndrome and recently MMNCB these symptoms nearly run parallel with MS .
My Spine Doctor has done brain cervical thoracic MRI awaiting results.
Lumber MRI L4/L5 multilevel degenerative retrothlesis with modic changes
L5/S1 spine nerve impingement
Also I have MGUS
Sorry medical Professionals but moan,had rough time with couple neurological Drs.
Believe my current Super DR is looking for MS or Myeloma
Done ivig treatment 4 cycles zero change
Q can ivig effect plasma toxicity in Myeloma or MS
Regards Kev 🏴☕️
Thank you Dr. Boster for your awesome videos. I was diagnosed in 99, I struggled with my dr to switch me to Tysapri in 2004 but he refused because I was doing “fine” and left me on Avonex. I gave up in 22 and went to Clinica Ruiz for aHSCT. I think it was good for me, however, three weeks ago I woke up with a problem in my bladder and legs. The MRI didn’t show new lesions, however, I don’t think relapses have to show in the brain especially since I had the disease for more than 24 years? My thinking now is to push for Mavenclad since I believe it does have a similar mechanism to Ahsct, what do you think of that idea?
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I was told by your colleague, Dr Oas to get ahold of you regarding my MS. I don’t see any other way to get ahold of you besides calling your office.
Would you recommend aHSCT as a treatment for someone recently diagnosed who is feeling a lot of MS symptoms even with Ocrevus? Why not recommend aHSCT as a treatment early in this disease?
@@lararose9106 hi lara i'd like to offer my own experience and hope it will help! i was in the same situation as you, unsure of ANY dmts cause all the side effects freaked me out. it took about three neurologists until one of them finally told me i should be on ocrevus asap and i had asked all my concerns and decided to go forward with it. i found out no PML has been reported so far which is a really huge thing (i'm JCV+ which is why i can't take that other dmt) and it appears to me they have to say it COULD potentially cause it since there is that slight possibility and they don't want a lawsuit. though considering how many years ocrevus has been out and no one has reported any PML stuff directly caused by ocrevus, it's either non-existent or EXTREMELY rare. with the whole breast cancer stuff (which also freaked me out to high hell) apparently like only 1-3 of the women who were in the test trials developed breast cancer BUT there was no links to it being caused by ocrevus. also i was told they have to say it could cause cancers even though technically there is really no difference between your normal probability whether you're on ocrevus or not. they are just required to report it could cause it, again, i assume to cover their asses just in case someone tried to sue for that. though despite suffering since the end of 2019, multiple doctors, i got my first real dose last year. i honestly didn't feel much different after. still felt blah. i had an acute allergic reaction which they told me to let them know next infusion.(since first dose is done in 2 parts, half and half to monitor) though for the most part, i was asleep the entire time. then my most recent dose (beginning of the year) after i did feel A LOT better, more energy, less fatigued. and i physically felt better than i've felt in years. while i did have another acute allergic reaction (throat felt sore/swollen) the nurses made sure i was totally ok and felt completely fine (no sore throat) before leaving. they also DO make sure everyone has allergy pills before infusion to avoid that stuff, but in my case i need an iv for it. though passed out again for mostly all of it! i will say as of right now i haven't been feeling as great since my next infusion is next month. i do notice at least ~2 months before each infusion i feel some of my previous symptoms more frequently and don't feel as great though it makes sense (they tell you that you might feel this way) since pretty sure it's just the b cells coming back. i've personally experienced NO new symptoms from ocrevus that i didn't experience before honestly. i get vertigo, migraines, and sometimes numbness in arms and legs but these were also the first symptoms i ever showed which led me to my MS diagnosis so i can't really say if it was from the ocrevus or not considering i've been dealing with it long before! i don't know if i'm lucky or not that my symptoms haven't gotten worse, but they really haven't gotten better. they tend to be less frequent but still the same intensity. i also can't say i've relapsed though i think my disease progression has been quite slow to start with considering my first mri in 2021 vs one i had before starting ocrevus in 2022 was hardly different (yippie!) i understand being very scared to take any of the dmts since they really are terrifying on paper and to put in your body, but please consider looking into some dmt options cause what's even worse is letting your disease progress further when you could of slowed it considerably. best wishes for you and i really hope you start feeling better, you're too young to be feeling this bad! 😢 sorry for any typos i'm typing this at like 1 am and here i am breaking one the MS golden rules of getting good sleep 😂
@@lararose9106I'm also heard people feeling worse on Ocrevus
@@lararose9106 I'm confused - you were offered Ocrevus but did you start taking it?
What is the procedure that you think is possible much safer? Will you please write it down? I don't think I understand it's name / title correctly - limitrada? Best Regards
Just curious why is it for people that have aggressive disease progression? Why not someone with less aggressive diseases if they choose to do this?
cause the risks really aren't worth it for someone who has had success with their current medications/aren't deteriorating rapidly. this is basically hard resetting your immune system and the treatment itself AND recovery are EXTREMELY grueling. it really should be a last resort after you've exhausted all other options. also it has a pretty hefty price tag for something that could potentially not work/kill you.
Can you Dr B or anyone that has had HSCT please tell me what is the status of fatigue once you get the HSCT?
Is it expected to be the same, little better or back to normap fatigue wise?
I know its snowflake disease, I'm just needing to know everyones experience
Dr. Boster, It’s it correct that if you take some DMT’s you no longer are a candidate for HSCT?
From my MS Neurologist the meds, if taken, will eliminate you for HSCT:
-LEMTRADA
-Mavenclad
I don’t remember if there were others.
Please respond to let our ms fam know, your opinion😊
I know with one trial you will need to be off certain DMTs. So, like for me, I need to be off tysabri for 5 months before transplant, same with ocrelizumab, alemtuzameb is 12 months free, tecfidera 3 Mos free. HTH with a little bit of your question.
@lararose9106 hey. Sorry just saw this.
Um, the only side effect from tecfidera was that I had bad flushing the first day. I really focused on the tips they gave when you take pill. Other than the 1st day no other issues.
I have not used ocrevus. I am on tysabri. My side effects are tiredness after infusion for first few days to week after. I have joint pain from it in my hips
I haven't heard back from the trial. I think I am going to hold off now.
Have you decided on doing a dmt?
Where can I Have HSCT in USA?
Can someone with primary MS get this?
Some don't feel comfortable to use lemptrada...
You have not mentioned the cost of SCT, It would cost me upwards of $100,00k for such a procedure. In Australia there is no therapy for PPMS with my age and the aggressiveness of my disease. I have however found my own natural supplement cocktail to slow it down. and yes I drink, and I smoke. At this point I ask the question, is it bad for my health?
Thank you! Could you please share your supplements' list? Nothing works for me. I need something badly
@@freethinkeralwayshi! I’m in the uk, and my ms has gotten really really bad since I tried the Tysabri injections! I’ve done a little research and found that lions mane supplements can help with remylination, I take a very high concentration of vitamin D, fish oil capsules and turmeric capsules; all are anti inflammatory apparently! I’ve been feeling better since starting all these but I’m yet to have my next loathsome mri! Good luck! 🤞🏻 ms is a cow!!!
Hey Dr Boster. Thank you for this valuable information and your perspective. Are you able to indicate if Lemtrada is an option for ALL forms of MS or only only RRMS?
Hi Aaron, Can those stem cells be used to regenerate the damaged Myelin sheath?
Really interesting - thank you
Can bone marrow transplantation be cure for MS?
My doctor put me in for this treatment but my insurance wouldn't approve it because the treatment is still being tried and tested. What can I do??
Great video! Ty!
You are a wonderful Neurologist for thos with MS, more should learn from you!
Question: Could you do a video on smoldering MS?
Great suggestion!
Doctor a little bit off topic can you offer a suggestion on the best cholesterol statin to take that doesn’t interfere with my MS?
Why would it not cure? Does the immune system re-learn to attack itself or did it mever forget?
I’m just 2 weeks into figuring out that I may have MS. I’m waiting for an appointment. What causes lesions on the brain? Could it be a trauma? I’ve had over 50 ECT’s, could this be a cause?
Hey did you figure out? Which symptoms did you have??
Do you have recent information on treatments for leukodystrophy? I know HSCTis being used. I was diagnosed and waiting until February for potential treatments. leukodystrophy and MS might be similar
Doctor I am from Pakistan and I don't understand your English plz the stem cells transplant stop the multiple sclerosis snd reverse the condition?
I'm currently in the process of getting myeloblative AHSCT. This is my "rest week". I've already done mobilization. Next week I get hit with the hard chemotherapy and get back my stem cells the week after.
I failed Tysabri and Lemtrada and have aggressive MS especially to my lower spinal cord. T7-12
how are you now?
Could you comment on stem cell transplant from your own bone marrow without the chemo?
Hi Dr Boster, you’re 🔥btw 😃
I’ve just been watching a 2yr old vid you made about brain MRI and really need to ask a question relating to my latest relapse scan.
I have a new lesion in my “Left Basal Ganglia” & I can’t get an answer on what that may affect in my body. I know that’s Parkinson’s attacks that region so would MS symptoms perhaps mimic symptoms of that?
I did have a shake in my right arm during the relapse and found standing still felt weird while moving felt ok?. weird.
I believe the mid brain tends to affect contralaterally? Ie the opposite side to lesion?
Can you shed any more light on MS lesions in the Basal Ganglia please?
Thank you
Rachel x
I have multiple sclerosis but how safe Is a stem cell transplant.I also have multiple myeloma. Another thing I refuse to have any COVID vaccines.
So now if the stem cells are taken from you, won't they still have the error of MS in the DNA?
My dr.is confused if I have MS or I Don’t. He kept me for 2 years in medication #zeposia, now he says latest MRI showed it’s not MS but I have the Symptoms , Any thoughts please?
QUESTION;
HSCT-DO PEOPLE after having STEMCELL TRANSPLANT USE DMT's?
Kemo is the scary bit.
O 😢