Aggressive Stem Cell Transplant Approach Halts MS for Years, But Risks are High

Aggressive Stem Cell Transplant Approach Halts MS for Years, But Risks are High

Autologous haematopoietic stem cell transplantation (aHSCT) has been used to stop autoimmune processes in multiple sclerosis (MS), although the treatment is not effective for every person. Now, an improved version of the technique is showing astonishingly good results, with patients free of both the need for treatment and the risk of relapses for years on end — but the risk associated with the procedure is substantial.

The study, Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group phase 2 trial,” was published in the journal The Lancet.

For MS patients, the current stem cell transplantation process involves stem cells being collected from the patients’ own bone marrow before the patients are exposed to chemotherapy. This treatment suppresses the immune system, so that when the stem cells are injected back into a person, the immune system is reset to no longer attack the body.

Dr. Harold L. Atkins and his colleague Dr. Mark S. Freedman, both from the Ottawa Hospital and the University of Ottawa in Canada, figured that immune suppression might not be enough to reset the system. They designed a Phase 2 clinical trial (NCT01099930) exploring whether completely wiping out the immune system might improve the odds of success.

The study enrolled 24 patients who had failed previous immunosuppressive therapy and had a disability level of 3–6 assessed by the Expanded Disability Status Scale (EDSS), indicating moderate impairment.

After having their stem cells isolated, the patients were exposed to a potent chemotherapy regimen composed of a mix of drugs. “The chemotherapy we use is very effective at crossing the blood-brain barrier, and this could help eliminate the damaging immune cells from the central nervous system,” Dr. Atkins said in a press release.

The study’s main outcome — survival at three years without any signs of disease activity in the form of MS relapses, new brain lesions, and EDSS progression — was reached in 69.6% of the patients.

One patient, amounting to 4% of the group, died as a consequence of the harsh chemotherapy, having acquired liver damage and a blood infection. The remaining 23 patients fared better, despite also experiencing side effects. In up to 13 years following the procedure, data showed that not one had another relapse. This was a stark contrast to the average of 1.2 annual relapses the group reported before the treatment.

Disease activity, in the form of brain lesions detected by magnetic resonance imaging (MRI), also showed an impressive decline, with only one new lesion among 327 brain scans. Among the nine patients who were followed for the longest period, the brain deterioration typical of MS slowed to levels seen in control individuals.

Eight patients continued to show improvement in EDSS scores 7.5 years after the treatment and at the initial outcome measure of three years, and 37% of the patients had stopped receiving disability insurance and returned to their occupations.

While only one patient died, 33% experienced moderate toxicity and another 58% experienced mildly toxic side effects of the treatment. The researchers, therefore, underscored that the findings need to be viewed with caution.

“The sample size of 24 patients is very small, and no control group was used for comparison with the treatment group. Larger clinical trials will be important to confirm these results,” Dr. Freedman said. “Since this is an aggressive treatment, the potential benefits should be weighed against the risks of serious complications associated with aHSCT, and this treatment should only be offered in specialist centres experienced both in multiple sclerosis treatment and stem cell therapy, or as part of a clinical trial. Future research will be directed at reducing the risks of this treatment as well as understanding which patients would best benefit from the treatment.”

In a commentary on the study, Dr. Jan Dörr, from the NeuroCure Clinical Research Center, Charité- Universitätsmedizin in Germany, expanded on the fragile balance between the procedure’s outstanding results and its poor safety profile. “These results are impressive and seem to outbalance any other available treatment for multiple sclerosis. This trial is the first to show complete suppression of any inflammatory disease activity in every patient for a long period … However, aHSCT has a poor safety profile, especially with regards to treatment-related mortality.”

Dr. Dörr also expects that the procedure is not likely to change the way MS treatment is approached anytime soon, since the risk of treatment-associated death is high. Over time, however, he suggested that aHSCT might become a standard therapy, particularly if its safety and tolerability can be improved and methods to identify patients at risk for toxicity are developed.

46 comments

  1. You do need to do chemotherapy, MS is NOT an auto immune disease, it is ASSUMED to be. This really irks me a lot. Just give them stem cells replacement therapy and see what happens like many others do.

    • Michele Tallick says:

      That’s why I’m going to New York to discuss this further with an MS specialist, I don’t believe they use chemotherapy either, just another way to get more money!!

      • Tonia Hodgins says:

        I’m so blessed to be a patient of one of the WORLDS leading expert in MS and the chief researcher of stem cell treatment to repair the damage MS causes. Dr. Sadiq is truly a man sent from God to help those of us MSers. He has the purest heart as well as a brilliant mind. At my last appointment he received a call confirming the last of the funds needed to begin building the new stem cell lab in the Tisch MS Center in NYC. He is approved for the phase ll stem cell trial that has 40 hand picked patients based on their disease course. If everything goes well he wants to put me in the study. I see him in July. If Karma exists ( it took 23yrs to find me?) I may begin as early as the beginning of next year. I might even have hope for my future again! I pray the lab is ready! God Bless the amazing man!

    • Karen says:

      Did you even read the article? The reason they decided to do the chemo was because doing the stem cell transplant without it wasn’t effective. You are right about MS not being an autoimmune disease, it is an ‘immune-mediated process’ which causes the immune system to attack the myelin. However, your comments confuses the issue, because one has nothing to do with the other.

  2. liz carroll says:

    HSCT Clinics in Russia, Singapore, Mexico, Singapore and other countries are now booked out a year in advance as MS patients take on the decision to have the treatment because it is the only treatment that has stopped MS in its tracks. There are many patients reporting wonderful recoveries from treatment at all these clinics. It is considered the chemo is an essential part of treatment.

    • Donna says:

      I had treatment in Russia last year and have seen very positive results from it so far – as time goes on I am noticing more and more improvement. It is the best decision I have ever made. An added bonus to my improved mobility etc is that I don’t have to use any medication – I was having to do Betaferon injections every second night and had been using that for about 10 years. My MRI since treatment shows no activity and I have had no negative health outcomes at all.

      • Elena netchiporouk says:

        Hi Donna, i have a family member is Russia that is suffering from disabling MS. Where did you get your aSCT done and whats the name of the doctor? Im hoping that she might be seen there. Thank you!

        • Ian Franks says:

          Hi Elena, in answer to your request for contact details of the Moscow HSCT center, here they are. Dr Fedorenko is the main person but initial enquiries should be made to his assistant Anastasia. The phone number below is a direct line to her. This is only information, it is not an endorsement or advice of any kind. I hope this helps.

          Denis A. Fedorenko MD, PhD, and Anastasia K.Panchenko,
          The A.A. Maximov Department of Hematology and Cellular Therapy,
          National Pirogov Medical Surgical Center,
          70 Nijnia Pervomayskaya,
          Moscow 105 203, Russia
          Call number:.+7 903 170 8606
          E – mail: [email protected]
          E – mail: [email protected]
          Web site: http://www.gemclinic.ru

      • Karina says:

        Dear Donna,

        could you please tell me the name of the clinic where you made the treatment in Russia?
        Thank you beforehand.

  3. Nicholas says:

    I wonder if the quote “potent chemotherapy” or “harsh chemotherapy” can be reduced in it’s strength and still achieve the same results against the MS but with a lesser effect on the patient.

      • Patti says:

        My doctor said Dr Burton is the best read about all the things he can do , depending on your progression of MS

        • Ian Franks says:

          I need to say that I am not a doctor and that what I say is not medical advice but that, as a journalist, I understand that not everyone will be accepted for HSCT for one of a number of different reasons. These can include a patient might be thought unlikely to benefit from the treatment, have too high an EDSS score, be unable to walk a short distance, or have another medical condition that is incompatible with the treatment. Therefore, just because someone is turned down does not make it a scam, actually, in my opinion, it is quite the opposite because scammers are more likely to take your money even if they should really turn you away.

        • Marge says:

          Dr. Burt denies you if he feels that you will not survive the procedure. If you are older than 45 you run the risk of your brain thinking that you are bleeding to death. When you are younger your body can replace the blood platelets more quickly as it rebuilds your immune system. This is a complete wipe out of your immune system. You can read all about the procedures and methods on PUBMED. I would never have survived either but I had an alternate treatment that did low-dose chemo for 3-6 days once a month until my white blood count responded. Jan 2012 – August 2012 then started on cellcept to keep the immune system suppressed. No new lesions, no progression, However, no recovery either because stem cell treatments weren’t readily available like they are today. I am investigating stem cells again now that my MS has stabilized and no more suppression is needed.

        • Elizabeth says:

          Dr. Burt denies patients whose MS is in the progressive stage. I had my stem cell transplant with him at Northwestern University in Chicago. It is true, they took me an inch from my life before giving me back my “cleaned” stem cells. Dr. Burt is the BEST! I have had no need for interferons for over 4 years. My only issues relate to damage caused by the high dose steroids used for so many years. I suffer of bone death in both femurs (that is very very painful and untreatable, only managed with pain meds). Look up Dr. Richard Burt in Chicago. There is no reason to go to Russia.

  4. Mike says:

    ITS NOT A CURE!!! 24 out of 25 is 96% success rate, thats symptom free living people, there is not one drug that can do that for even one person in the world, drugs just hide symptoms, god almighty who is buying all this rubbish, david camerons wife gets her photo in the ms magazine, why doesnt someone like that do something to stop all this time wasting, and give people the choice to have stem cell treatment, isnt it supposed to be a free country. Jack Osbourne why dont you come out and tell the truth about what you had done in germany behind clossed doors,instead of teaming up with drug companies helping to hide the truth and suppress the power of stem cell therapy. Ms patients have little children whos mommys and daddys life you are all risking and it is SICK.

    • Caroline says:

      Totally agree with every think you have said its so frustrating Knowing there is something that could help me and can’t do nothing about it

    • mehdi says:

      I wanna use chemo, stem cells, antibiotics whatever! It is my body and I am the one suffering. what you got to lose with MS patients. Our lives are miserable as is. Not a single day goes by without me contemplating killing myself. Stupid FDA money vampires!!

  5. Jamie says:

    I just got accepted onto the Stem Cell treatment today. I’ve stopped my MS treatment to clear my system and I get the stem cell transplant in around 5 months.

    It is a cure, just a brutal one with risks. The only reason its not put out there as a cure is that it is not suitable for all and not enough people have had it. Things have already moved beyond the Canadian study.

    There are some very confused comments on here.

    • Fatima says:

      Where did you get accepted into the trial at? US or Canada?
      I’ve been off drug for months now. Lolz! None seem to make it past the 2 year mark working so neuro agreed to just “monitor my symptoms”…

  6. Bandy D says:

    In 2010 I had Immunoablation using high dose Cytoxin to bring my immune system down to the lowest amount of immune cells (0.02). I spent 3 weeks isolated in a hospital room to monitor and prevent any potential infection. I was administrated Neopogen for stem cell mobility from my bone marrow. My immune system was rebooted with no MS antigen that initially triggered MS relapses. In four days I had an immune system much like a new born. I have taken no DMD’s since. My new immune system has no memory of MS and any previous allergies. I am post 6 years with no relapses. While I await nerve repair therapies the disease is halted. With high level specialized hospital intensive care this procedure can be done safely. We do have verifiable documentation that Sandi Selvi is post 14 plus years. Join the Facebook group HSCT.

    • Nancy says:

      Hi I have been thru the high dose cytoxcin then neupogen while in the hospital. I felt wonderful during the chemo.
      Neupogen knocked me on my ass!
      I went in using a walker came out using a cane- 2 days later I was walking with nothing. Only lasted 2 months. Ever since I’ve been in a wheelchair. They say Mri shows no activity does anyone know can I do it again?

  7. Lonie says:

    If I were afflicted with MS I would first try the fasting route as studied by Valter Luongo, of USC research I think it is.

    Off the top of my head, I think his program is to fast for 3 or 4 days and eat for seven… for three fasting cycles.

    Ostensibly the fasting causes your body to turn on and devour your immune system and when you refeed, it rebuilds it naturally using haemopoietic stem cells from you own bone marrow.

    The link is:
    https://www.eurekalert.org/pub_releases/2016-05/uosc-fdr052616.php

  8. Kristen M. says:

    I had my stem cell treatment for PPMS with no chemo!!
    Fabulous results that have lasted since 2013, not a single new lesion in my brain, MRI presented as “grossly stable and improved” within 3 months of treatment.
    Check out StemGenex in California!
    Awesome professional and caring staff!
    Kristen

    • Andy says:

      Hi Kristen,
      I am really interested in your post. I am yet to have my diagnosis X, but unfortunately it seems highly likely that I have PPMS and I am only 35. At present I can still walk and am just about coping at work, but need to stop this disease. I understand you had your treatment in 2013, when were you diagnosed and what does this type of treatment cost?

      Thanks,
      Andy

    • Sunrize says:

      Wheldon Protocol.UK

      Dr. Wheldon’s wife had MS. Very informative website. I have been in US drug trials for MS where they scewed results. I had Herxenhiemer reactions the drs did not understand. The Wheldon Protocol works. The Herxinhiemer reaction is severe if you don’t follow the protocol correctly.

      • Matt says:

        Where are the best results? Where do I go? I have been diagnosed in 21 I am now 37 used to skateboard had all the balance in the world now I am balance is very poor. Please help me!

  9. Hillary bienvenu says:

    I had received the autologous stem cell transplant 1 1/2 years ago. It is not a cure and can not undo what has been done. I was told by my neurologist that it was my last option. When you have tried everything else sometimes you have o choice. I was diagnosed at 16 and had done every form of treatment available. The transplant should always be very last on the list. I was just happy to have my life back at 28.

  10. Barry rudd says:

    I had hsct in new dehli
    I had PPMS I’m 65
    So far I’m worse off I cannot transfer now and on morphine for leg pain

  11. SHIRLEY THOMPSON says:

    I am seriously considering stem cell therapy for MS for secondary MS in either Mexico or Germany. Has anyone had this procedure in Germany and if so, what did the procedure consist of: type,length of time, chemotherapy and type, is hair loss permanent, cost, success, contact information of hospital, etc…?

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