HOW HSCT WORKS?

A SIMPLE DESCRIPTION OF HOW HSCT WORKS

This treatment is designed to reset your immune system and halt the progression and activity of multiple sclerosis. A very simple description has been attached by many to describe how HSCT works.  It has been described as a “re-boot” and in many respects this simplistic explanation is perhaps the easiest way to understand how the procedure works. In the same way that you re-boot your computer when it is playing up, HSCT re- boots your immune system and restarts it so that the malfunction is repaired and it works properly again.  Your new immune system has  no cell  memory of malfunction and no longer attacks your nerves (myelin) so that your body has a chance to repair the damage previously inflicted! No more MS!

HOW HSCT  CURES MULTIPLE SCLEROSIS

HSCT affects a cure for MS by either completely (myleoablative) or partially (non myleoblative) wiping out the memory of the bodies immune system. This is achieved by effecting a change of the body’s overall T and B-lymphocyte  (antigen binding) collection thus making autoimmunity inactive and consequently causing the body’s immune cells to become “antigen naive”. This results in restoring immune self-tolerance. Ultimately this stops the underlying MS disease activity & progression and is where the “resetting” the immune system phrase is coined. After HSCT is performed the body then has a chance to repair or reconfigure adaption to existing neural damage without the hindrance of ongoing disease activity and progression, often resulting in improvement of existing conditions and ongoing recovery of lost function.
Chemotherapy is used to destroy the T- and B-lymphocytes of the body which carry the faulty memory so that virgin cells which  are unprogrammed,  may replace them. These  are generated by the bone marrow.   Successful HSCT is entirely  dependent on the chemotherapy aspect of the treatment, which is why simply injecting stem cells into the body does not render the body’s immune system self-tolerant. It is imperative that the chemotherapy destroy the bad cells before the newly harvested virgin cells that have been produced in the bone marrow be reintroduced to the body to get the new immune system firing on all pistons!

STIMULATING PRODUCTION OF STEM CELLS.

Injections are given twice a day for approximately 4 days in order to stimulate production of stem cells. This process, which causes extra stem cells to be produced, is known as mobilization.   This is a very straightforward process and mild bone pain if experienced can be alleviated with over-the-counter painkillers.

COLLECTION OF STEM CELLS

Collection of stem cells is a process called “Apheresis”. Some pain in the hip has been reported but in most cases it is a pain free procedure.  Blood is withdrawn through a catheter and circulated through a cell-separating machine, which separates and collects white blood cells, including the stem cells. The remaining blood cells are returned to the body at the same rate that they were removed.   After collection the cells are frozen and stored under special conditions until they are needed for transplant (reintroduction to the body).

ADMINISTERING CHEMOTHERAPY

Administration of chemotherapy takes four days. This will wipe out the existing immune system.  Analysis of the blood will be used to evaluate when the system is adequately prepared in terms of “wipe out” for the stem cell transplantation.  Once it has been determined that this has taken place and the body is effectively devoid of its previously malfunctioning immune system, isolation will begin and only attending medical staff will be allowed access to minimize any possibility of germs entering the sterile environment while the immune system is effectively non existent.

PERFORMING THE STEM CELL TRANSPLANT

Once chemotherapy is completed the previously harvested stem cells are returned to the body.  It is similar to a blood transfusion. People have commented on symptoms that include nausea, diarrhea, cough fever, chilling and often a headache. Medication is provided to decrease these effects. It is worth remembering the associated discomfort is short lived and the trade off at the end of the day is incomparable in terms of what it offers! The frozen stem cells are thawed in warm water quite simply and infused back into the body.
 

THE ENGRAFTMENT PART OF THE PROCEDURE

Engraftment is the word given to the process when the harvested stem cells that have been reintroduced to the body begin to grow (engraft). This usually takes between one and three weeks and confirms that the new immune system is now producing blood cells as expected. Aching in the bones, lower back thighs and pelvis has been reported during this phase, but the new immune system will be totally devoid of memory of any MS! Once the new system is back to operating normally the blood count will rise and the white cells in the blood will begin to resume their job, which is to fight off bacteria and prevent infections. Shortly after this happens the hospital releases the patient, but it must be remembered that the immune system will remain compromised for some time. Caution must be observed in terms of exposure to any sort of illness for the next year at least.

THE RECOVERY PHASE

The complete recovery phase is acknowledged as taking twelve to eighteen months. Interestingly in the same way no two people have exactly the same symptoms from MS, recovery works in a similar way. Some people have reported seeing continued improvement long after the procedure. They claim that improvements have taken place as long as 5 years post transplantation. Depending on the type of MS diagnosed prior to  receiving treatment, results can vary considerably. Please see “what to expect” in the menu under ‘About HSCT’. What has been acknowledged more recently is that excluding the small percentage of people that are considered “failed” (approx. 15% – 25%) HSCT has been shown to halt disease progression of MS in all types of the disease. The best  part of getting HSCT  is finding out  that the procedure has been successful and underlying disease activity has indeed been halted. The icing on the cake is experiencing improvement and often reversal of pre-existing symptoms, some or in the case of the lucky ones – many!
 
 
 
 
 

 

 

19 comments

  1. I would like to know if there are any grants or funding available for the HSCT? If not how is the average disabled person like myself able to afford to have this done?
    I am in so much pain most all the time I would do anything to make it stop

    1. Hi Lloyd. Unfortunately HSCT is not supported as a valid treatment by most (not all) neurologists. In the UK they have been treating people on trial (Sheffield – I can provide the phone number if you are interested) and a few cases compassionately off trial, but only in cases of severe RRMS when all drugs tried have failed to halt the rapid progression of the disease. What type of MS do you have, when were you diagnosed and what is your age?

  2. Thanks for info v useful. I’ve had ms since 14 and am 53 now using fampyra n still mobile. Given the ms longevity for me do u think this tratement would be beneficial to me? Or have I had the condition to long? Thank you.

    1. Hi Lynn,
      It depends on many factors. HSCT has been shown to stop disease progression in all types of MS, which is why I set up this site as some neurologists refute this claim! When the disease progresses from RRMS to SPMS or if it is PPMS from the start does affect who will treat you and where. Most neurologists want a very standard RRMS with failed first line DMD’s and active lesions/inflammation. This conforms to the EBMT guidelines, but Dr. Federenko in Moscow has had phenomenal success treating progressive patients…both PPMS and SPMS. It would be a good idea for you to join the HSCT forum on facebook. It is a closed group so you have to request to join but there are masses of people on there that have been treated and can share information. No you are not too old – especially if you are still mobile. The group is: Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases. Here you can ask questions specific to your case. What sort of MS do you have now and what drugs have you taken? If you would like me to send you the latest Russian paper and the results please e mail me at: hsctstopsms@gmail.com

  3. When I click on the “about MS” tab, nothing happens, and no drop down box to reveal “what to expect”. I’m 54 years old, have had MS since 1988, and have been on 2 of the interferons, since 2001. I think I’m SPMS now, as I’ve had a steady decline since 2007, foot drop, spasticity, and what I call left hip drop. In the last year, I’ve developed more left arm weakness and inability to hold it up. I use a rollator to get around my home, but use a wheelchair or scooter when out and about. This is a treatment I’m interested in, but curious as to reversal of symptoms in SPMSers and PPMSers. Might be too late for me. And I’m very financially challenged as well.
    Still I’m curious about this procedure!

    1. Hi Jayne, I think you mean “about HSCT” which is not a live tab. The actual information links are in the menu below that when you click on it. This site offers concise information but if you want to ask specific questions please join the forum : “Hematopioetic Stem Cell Transplant – MS & Autoimmune Diseases” on facebook. It is a closed group so your questions etc will not appear on your facebook. You can ask questions there to see how HSCT can help you and how you can access treatment! Good luck with your journey! :-)

  4. Hi I was diagnosed with ppms 2 years ago…from stumbling to weak leg…to crutches…now need mobility aids…
    Can you give me any information please on the stem cell treatment trials here in uk..and info on how long it will be before legislation to label this and any campaigns out there to lobby government once sct is passed trial stage and awaiting nice authority to get it out on nhs. Many many thanks. Time is of the essence for suffers of MS who are progressing sometimes daily in a decline.

    1. Hi Debbie,
      Sadly here in the UK they will only consider RRMS or very early SPMS for HSCT. This is very limited and hard to get on the program, as you need specific criteria – failed DMDs and enhancing lesions and inflammation that is shown on an MRI with contrast. PPMS is not considered to benefit from HSCT as there is generally no inflammation which is the reason that UK Neuros will not consider you for HSCt. This is primarily due to the EBMT who established guidelines based on Dr. Burt in Chicago (considered the main pioneer of HSCT)who steadfastly claims the HSCT does not work on progressive forms of MS, although this has been proven again and again to be untrue. Dr. Federenko in Russia has has phenomenal success with PPMS patients. You can google them. If you would like more info on how HSCT has helped others with PPMS please join HSCT Awareness on face book.

  5. So many like myself have MS .
    Hard to understand why more things like this is not shared or studied..and really are so many things claiming complete cures or close anyway. Guess you have to take some with a grain of salt.. Most in the medical field say they are trying to find cures. But are quick to say there is no cure for MS .. But are so many natural cures stated . That sound so good.. So is hard to know where to actually start..
    Cause there is so much out there when you Google natural cures.. John Bergmen or Bergmen..

    1. Yes there are lots of new things coming up too John. Anti Lingo is one of the most promising. Google it. Thanks for your comment!

  6. I am no longer sure where you are getting your information, however good topic. I must spend a while learning much more or working out more. Thanks for excellent information I was on the lookout for this information for my mission.

  7. Hello,

    I had a small question, when will this Hsct treatment be approved by the FDA?
    Will it EVER be approved? I can’t find any information online…

    Louise

      1. Why does it take so long to get this treatment approved? Lemtrada or Campath only took 4 years!

        One small tip, the risks of HSCT are also very important to know, if you could add this on your website …

        Grts
        L

Leave a Reply to julie Cancel reply

Your email address will not be published. Required fields are marked *