UNDERSTANDING HOW HSCT WORKS

 

Diagram showing how HSCT is performed.This treatment is designed to reset your immune system and halt the progression and activity of multiple sclerosis. HSCT has been described as a ‘re-boot’ for the immune system. In many respects this simplistic explanation is  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. The immune system restarts. It stops dis-functioning  and it returns to working properly, the way that it did prior to MS. The new immune system has  no cell  memory of malfunction and therefore no longer attacks the nerves(Myelin.) The body has a chance to repair the damage previously inflicted! No more MS!

 

HOW HSCT  CURES MULTIPLE SCLEROSISNormal nerve with healthy myelin sheath

 

HSCT affects a cure for MS by either completely or partially wiping out the memory of the bodies immune system. There are two ways to do this. Myleoablative HSCT is the harsher treatment and thoroughly deletes the memory. Non Myleoblative HSCT uses a different method that only partially removes the bodies memory of the immune system.  Both forms affect a change of the body’s overall T and B-lymphocyte(antigen binding) collection. This makes autoimmunity inactive and causes the body’s immune cells to become “antigen naive”. Consequently the body becomes  Immune self-tolerant once again.

Ultimately this stops the underlying MS disease activity & progression.  “Resetting of  the immune system” has then taken place.  After HSCT treatment the body can repair itself. Sometimes this means that it can reconfigure adaption to existing neural damage. Alternatively the body has an opportunity to repair itself without the continuing onslaught of disease activity. The result is an improvement of existing conditions and ongoing recovery of lost functions.

 

CHEMOTHERAPY IS  AN ESSENTIAL PART OF HSCT

 

During HSC, chemotherapy destroys the ‘T’ and ‘B’ lymphocytes in the blood. These are the cells that carry the faulty memory and attack the Myelin. Once eliminated, un-programmed Virgin cells, which are manufactured in the Bone Marrow are infused into the body to replace them.  Successful HSCT is entirely  dependent on the chemotherapy aspect of the treatment. It explains 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 first. After this is completed,  new virgin cells are harvested from the bone marrow. Finally these cells regulate the immune system  the body to get the new immune system firing on all pistons!

 

STIMULATING PRODUCTION OF STEM CELLS

 

In order to stimulate the production of new stem cells,  injections are given twice a day for approximately 4 days. This process is called  mobilization.  Mobilization is a very straightforward process, although it may cause mild bone pain. Over-the-counter pain killers should be sufficient to alleviate any discomfort caused.

 

COLLECTION OF STEM CELLS

 

“Apheresis” is the word given to the  collection of new stem cells.  Some people experience a little pain in the hip, but in most cases the procedure is pain free.  Blood is withdrawn through a catheter and circulated through a cell-separating machine. This machine separates and collects white blood cells and this includes 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. They are thawed once they are needed for transplant (reintroduction to the body).

 

ADMINISTERING CHEMNerve with damaged MyelinOTHERAPY

 

Administration of chemotherapy takes four days. This wipes out the existing immune system. Analysis of the blood evaluates when the system is adequately prepared for the stem cell transplantation. Once confirmed that the “wipe out” of the immune system has been successful isolation begins. This means that the body is effectively devoid of its previously malfunctioning immune system. Isolation will then begin and only attending medical staff can enter the isolation area. Isolation is necessary to prevent the HSCT patient being exposed to germs. At this stage the immune system is non existent, so the patient must have the extra protection that Isolation offers.

 

PERFORMING THE STEM CELL TRANSPLANT

 

Once the Chemotherapy ends, preparation of the thawed and newly harvested stem cells begins. The next part of the procedure is to reintroduce them to the body. This is similar to a blood transfusion. People have commented on symptoms that include nausea, diarrhea, cough fever, chilling and often a headache. Medication eases these symptoms and the associated discomfort is short lived. The trade off at the end of the day is incomparable in terms of what it offers! The frozen stem cells defrost in warm water, quite simply and infused back into the body.

 

THE ENGRAFTMENT PART OF THE PROCEDURE

 

During HSCT treatment, ‘engraftment’ is the next stage of the process. ‘Engraftment’ is the word used to describe the growth of the newly harvested stem cells within the body. This usually takes within one and three weeks. It is confirmation that the new immune system is now producing blood cells as expected. Patients have reported experiencing aching in the bones, lower back, thighs and pelvis during this phase.  The newly functioning immune system will be now be totally devoid of memory MS!

 

The immune system will now be operating normally. The blood count will rise and the white cells in the blood will resume work. They will again be fighting off bacteria and preventing infections. Shortly after this happens the hospital releases the patient.  It is important to  remembered that the immune system will remain compromised for some time. All facilities advise being cautions about exposure to germs or illness for at least a year after HSCT.

 

THE RECOVERY PHASE

 

The complete recovery phase takes twelve to eighteen months. If you have MS you will be aware that MS symptoms are like fingerprints. Each person will have their own specific version of the disease. In this respect recovery with HSCT is similarly unique to each patient.  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” http://www.hsctstopsms.com/what-is-hsct/.  HSCT has been successful in halting disease progression in all types of MS. A small percentage of people experience ‘failure’ (approximately 15-20 percent). The HSCT facility in Russia has successfully treated several Primary Progressive patients.  The most exciting part of getting HSCT  is finding out  that the procedure has been successful.  Success means that the previous underlying disease activity has ended. The icing on the cake is experiencing improvement and often reversal of pre-existing symptoms.  There have been some truly miraculous recoveries.

 

21 Replies to “

  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

      1. Hi I’m in Australia and very interested in joining the facebook group I was diagnosed in July with RRMS would love to learn more can you please send me the link or name of the group to join up. Thanks

        1. Hi Lenette. If you put HSCT into the search bar in Facebook many different groups will come up. If you are in Australia you should most definitely look for ‘Moving Mountains to stop MS’ which is run by my friend Kristy Cruise who was very successfully treated with HSCT and is incredibly knowledgeable particularly about the options available in Aus.

          https://www.facebook.com/MovingMountainsForKristy/

          Good luck and good health. 🙂

  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

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