Friday, 15 August 2014

Update 45 - HSCT cure for CIDP - Facts (3)

Once you are accepted (and have paid!) you will start the treatment. Please be aware setting up payment for this type of treatment is NOT straightforward, mostly due to the country (Russia) and the monetary conditions, but also due to the large amounts required and the security checks put in place by banks (it can be rejected even if they have been informed, so have a plan B).


  • The process itself is not without risk - apparently there is a 1% change of death, but if you have CIDP and it isn't getting cured, then it will only get worse and it could kill you anyway!  
  • Also they put tubes directly into your juguler vein - which looks a lot worse than it is (apparently). These they do insert and remove at various phases


The treatment commences with use of a steroid/anti-inflammatory drug via IV (e.g. Solumedrol) - it helps ease the pain from boosting the bone marrow to produce the millions of brand new cells that are needed for the process. The other medicine injected was to reduce the risk of infection (e.g. Neuprogen).

The drugs can introduce difficulties in sleeping and bone pain (which may not be there initially but can come in over time), plus other side effects like your hand shaking.  If you want the full set of sire-effects please look it up on google. Exactly how much pain is felt, seems to be dependent on the patient and their pain threshold - my view would be this should be acceptable, seeing as compared to CIDP and the hope this brings, it must be worth it?

The next stage is getting those new stem cells out of your body!  This is called apheresis.  It is around 5 hours in a day attached to a machine.  Below is a picture of the type of machine used:

It is basically the same type of machine that is used for kidney dialysis.  It draws all your blood out (twice in 5 hours), filters out the new stem cells and puts the blood back.  Apart from having to lie there for 5 hours solid (and the bodily functions that need to be considered) there seem to be minimal side effects.

This is usually expected to last for 2 days, but it can take longer to collect the cells/  It is expected they need over 2 million of the new cells (this is a rough estimate!). Once the process is complete and they have enough cells the patients are given a day or two of rest.

Apparently in some surgeries (e.g. Dr Burt in Chicago) the chemo can be done before the apheresis, this can assist in the production of new cells, but you can get way more bone pain.

The next stage is the chemo....