Interesting posts on Rituximab, herewith further info that may be of
interest since my lost post on the subject back in January.


Rituximab has been suggested to me by Prof. Machin at UCL London because my
last protease enzyme test showed my level to be so low that I was at
serious risk of relapse and pregnancy definitely not advised at this time.
Preliminary research has shown that treatment by Rituximab can help
stablise the enzyme level (I am thinking this is because it "kills" off the
"nasty" that attacks the enzyme level whereas other treatments (eg.
Cyclosporin only suppress the "nasty") - there is a very good article on
Rituximab on the Cancerbacup web site but obviously refers to its use in
treating non-Hodgkinsons disease).


However, its not without it problems/side effects and possibly Jeannie why
your consultant is keen to leave it a present.


It suppresses your immune system (my argument to that is so does Steriods),
its not licensed in the UK for the treatment of TTP therefore the
manufacturers will absolve themselves of any responsibility with patients
using it for that purpose and thirdly its expensive - it has been agreed
that I should receive this treatment, however, my consultant at Reading has
had to apply to the local Funding Committee for approval and four months
later we are still waiting for a response - they obviously do not realise
just how expensive each plasma exchange is (£1800 for EACH exchange in my
case)!


The drug is given in four infusions over a four week period – the first
infusion usually requires an overnight stay in hospital to monitor for any
adverse reactions, there is further information on possible side effects on
the manufacturer's (Roche) website.


However, initial research shows that TTP patients treated with Rituximab
have responded well - I am more than willing to give this drug ago - I have
got absolutely nothing to lose and everything to gain. If and when
approval to start treatment is given I will keep a diary of my experience
with it and post on this message board.


Lisa C

THE GROUP MEMBERS ARE NOT MEDICAL PROFESSIONALS. YOU MUST SEEK MEDICAL ADVICE IF YOU HAVE ANY CONCERNS REGARDING TTP.