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HSCT
HSCT has been around for a while, but few know about it. I read about it when I was diagnosed, but I learned it isn’t a quick decision to make with MS. There’s a lot to think about. There have been great reviews from those who went through the procedure!
Have you ever looked into this?
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18 Replies
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I had aHSCT 2 years ago in Mexico the top place to get it there are 3 places in the world that are very good. Lots of “snake oil” places so do research. It has stopped my rapidly evolving ms and no new lesions since I had it done. I wish I had it done sooner but I didn’t have the money or the research I had to crowd fund for most of it. I was only diagnosed in late 2022 and I was having relapses every three months with new lesions mostly on my spine at that time. It is different for everyone but research is key and stick to the guidance that the medical professionals give you. There are no shortcuts. It will take one year of absolute hard work and then another year of hard work but not as hard but nothing comes easy.
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Thanks for sharing! That’s awesome that you decided to do it & has changed the course of your health. I heard about Mexico & Russia as top places to get it done!
I love hearing about people’s experience who have gone through it. Like you said it’s a lot of work and everyone is different.
What changes did you notice from getting it?
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Where in Mexico did you go?
I’ve looked at CellTX.
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5/2019 aHSCT (Moscow)<div>
Since HSCT:
HALTED RRMS progression
No new lesions
No exacerbations
No DMTs being used
Only HSCT provides potential to HALT MS progression (works in most cases, be sure to research locations & efficacy, cost, etc.).
NOT A CURE:
They will not tell you this is a cure, but only a way to halt MS progression and put MS into remission.
Most people I know who have gone through procedure wish that they had done it sooner. The sooner you have it done after diagnosis, the more effective the treatment.
I only know of Moscow and Mexico. Both appear to have substantially similar procedures.
Expect 2-year recovery. Fatigue driving recovery time.
Expensive
There is NO DMT that can come close to comparing to HSCT.
Most neurologists do not know about HASCT, or will not tell you about it, or will tell you that it’s too dangerous.
The procedure is substantially similar to that, which is performed on cancer patients in the united states, to halt the progression of their cancer or put them into remission.
Any facility that is not performing chemotherapy is part of the HSCT procedure is not actually performing HSCT, and is a scam. Be careful of imposters
I am very bummed that most physicians, neurologist, and MS societies/publications do NOT highlight this most effective and promising treatment. At best they put a short article that mentions HSCT and provides many negative possibilities and side effects that are possible with HSCT.
If I had known about it, I would have headed for Moscow the same year I was diagnosed.
Research it on the internet yourself. You can speak with personnel at the practicing facilities to obtain additional information.
Hope this helps…
HISTORY:
Dx 2007/2008
DMTs:
Tysabri
Aubagio
Lemtrada (very poor choice)
Ocrevus
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Thank you for sharing this information & your experience. I have heard that the sooner you get it from diagnosis, the better. How long did you wait to get it done?
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Unfortunately, I was diagnosed 2007/2008 and did not learn of aHSCT until late in 2018 and headed for Moscow 5/2019. By that time my RRMS was transitioning to SPMS, which lowered my chances of successful aHSCT, But, after reviewing my MRI, Dr. Frederinko (Moscow) thought possibilities were good. I believe I got hi, the MRI before making plans to go to Moscow.
Looking at the data and anecdotal information from other patients I met make me biased toward recommending early treatment, if possible.
Best I can tell, things worked for me, i.e., no new lesions, no exacerbation, no need for DMT use. Unfortunately, so much time between diagnosis and treatment did not do me any favors.
Any damage caused by MS prior to the time I had aHSCT still remains.
My apologies for the long reply.
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No need to apologize! This information can help others. Time is a factor, it seems, so I wonder if those newly diagnosed get to hear about it as an option to look into.
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well I’ve had MS x > 30 years, I now have chronic progressive MS, I was relapsing remitting x 20 years, now chronic progressive. I was a family doctor for 30 years and retired 8 years ago on my neurologist’s advice ” you just aren’t remembering things well enough Adrian, it’s not safe for you to continue practicing” so I retired a few months later. I did stem cell treatment about 15 years ago, my brilliant neurologist said “do it if you want Adrian, but it won’t work”, sadly he was correct” But I didn’t have HSCT, I had a procedure in California that was pretty quick and only took 3 days. They were very nice to me there, but again, no benefit. I don’t think now with chronic progressive any stem cell will work. I exercise eat healthy read etc etc and that is all I can do now
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Thank you for sharing! Sorry that the stem cell therapy didn’t work. Happy that you continue to stay active and do what you can to stay on top of your health.
Looking back, would you have done HSCT?
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Yes, I checked out one or more clinics in California as well. I believe specifically one in Southern California close to were I lived at the time.
They did NOT perform chemo to wipe out the immune system. I learned over time that a procedure that does not chemo the immune system is NOT aHSCT.
Checked out clinic in South Americas well. Forgot about it after I learned they did not administer chemotherapy. Also was in a MS group with individual who went to that clinic. He reported feeling better/invigorated for a time afterward, but experiencing no long term benefit.
But, my RRMS was progressing into SPMS when I went to Moscow in 2019, and I can report the treatment HALTing progression. Of course, most all damage caused by MS prior to treatment still remains. But progression is halted and NO DMTs are required.
My point is, there is always hope.
You may want to go to hsct-russia.com and get in touch with Dr. Fedorenko. His assistant and international patient coordinator, Anastasia Panchenko, can be immensely helpful in facilitating contact.
Godspeed
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I had HSCT 9 years ago at Northwestern when the stage 2 trials were ongoing. Since then I would say that I’m doing better than I would have without it, but I think I would have remained on a DMT that was effective for spms looking back. I had leg issues, and I am still walking 17 years after diagnosis, I think the smoldering inflammation could be better if I had taken something after HSCT? I’m still hopeful for remyelination therapies, but I sure do miss that myelin.
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Oh wow. I wasn’t aware that you can take a DMT after going through the process. What changes did you notice after it? Do you still deal with certain symptoms?
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I know someone that had the procedure successfully done in Russia. She has been symptom free for 15 years. She recommended the book Everyday Miracles by Richard K. Burt. It was very informative. Unfortunately, not effective for progressive MS, which is what I was diagnosed with in 2024.
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That’s great! It’s nice to hear success stories! I was actually gifted Everyday Miracles by one of his patients whose story is in the book. I still have to read it!
📚
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Three trials I’m watching compare autologous HSCT with high-efficacy MS treatments. In the US, the NIH-sponsored phase 3 BEAT-MS trial (NCT04047628) studies treatment-resistant relapsing MS and is expected to finish around 2029. In Europe, the phase 3 RAM-MS trial (NCT03477500) compares HSCT with high-efficacy treatment; I’m watching for its results. In the UK, StarMS recruited 94 people, with results expected in 2027. These trials mainly address relapsing MS, so they won’t by themselves settle the question for progressive MS. I follow them on CureSpy for status and results updates.
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Thank you for sharing Theo! Are you leaning on taking this approach? Are you on a DMT now?
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Theo,
<font color=”rgba(0, 0, 0, 0)” face=”inherit”>I trust my reply to you comes </font>across<font color=”rgba(0, 0, 0, 0)” face=”inherit”> in the way I intend it to…</font>
My first thought when reading your message was:
While you are waiting and watching for the results of studies that will not be complete for years in many cases, MS is continuing its insidious progression, causing damage to your system that cannot be erased or remedied by any known drug or treatment.
So, you can watch and wait, but no other DMT known at this time can promise to HALT MS in its tracks and stop the progression of this disease as aHSCT does.
I do not know the exact course of your disease and I do not wish to tell you what treatment you must pursue.
I only wish to urge you to look deeply into aHSCT and make a go/no go decision sooner rather than later.
I know of no DMT or treatment that promises to HALT MS progression, as aHSCT does. But I do know that no matter how successful an aHSCT treatment may be, it CANNOT reverse most/any of the damage caused by MS prior to treatment.
As with most things in life. time is not on our side.
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I was just going to ask if this would help with Secondary progressive. It sounds like no. Am i correct?
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