Well just an update to let everyone know that I have commenced on Rituximab
infusion treatment. I went into hospital last Monday for a further review of
my Arthritis and it still is uncontrolled despite several drug combinations
and new Anti-tnf therapy failures. The last treatment Leflunomide also
failed to work. The drug Rituximab is not a licensed drug as yet but they
are hopeful that in the next month or so that it will be licensed for RA.
There is'nt a lot of information with regard to this drug and even the
consultants only have limited information but they are hopeful that that
will change when its about to become licensed. The consultant discussed at
great length with me the risks involved in being a guinea pig. Two ladies
have commenced on this drug in a combination with Methotrexate at Aberdeen
and are so far doing well. However no male patient has been prescribed as
yet and thats where I came in, because methotrexate had a very bad habit of
making my liver function go extremely high it was decided to try an unused
combination therapy by using Rituximab and Leflunomide together. He also
disclosed that because it was never tried before it carried significant
risks, risks which I'm prepared to take after years of constant pain,
swelling, inflammation, destroyed joints etc.

The infusion itself is done in two parts one to begin with and another in 15
days time. The infusion is supposed to last for 4 hours the first time then
a wee bit quicker the second time around. However things are never that easy
when I'm around. The process starts by having an infusion of 100ml of methyl
prednisilone which is flushed through, you are then given an IV injection of
Piriton anti-histamine to counteract any problems and only after half an
hour does the actual Rituximab infusion begin. It is a 1000mg/500ml
infusion. They start the infusion at 25mg an hour and gradually increase in
steps of 25 mg's until 100mg's an hour is reached, with constant monitoring
of all the vital signs etc. however like I say things are never easy when
I'm around because as soon as they increased the rate to 100mg's an hour I
developed a bad rash and itch to my head, face, chest etc which forced the
immediate infusion to be stopped and the oncall doctor to be summoned, after
examination it was agreed that the episode had been caused by the increased
rate but to be sure they called back to hospital my Consultant on a friday
evening to examine me. He agreed that it was best to continue with the
infusion back at 25mg's and increase it again to a maximum of 75mg's which I
was fine at. During the infusion process I was very nauseated, tired and
very warm as my temperature rose upwards of 37.5. The infusion which was
supposed to last 4 hours in fact took 8 1/4 hours to complete, all in all I
was on infusions from 14.30 pm when it all started until 0100hrs the next
morning and I can tell you it was'nt the most pleasant of experiences but I
remain hopeful that this drug might just be the drug to help me get some
sort of normality back into my life. It is an expensive drug which the
pharmacist told me costs about £4000 per infusion but in my eyes will be
worth every penny should it work and alleviate the problems.

Just to add insult to injury that whilst I was in hosptal I received a date
for my replacement elbow joint which is badly destroyed for the 5th June,
however, with the interference of my immune sysyem at this time it was
discussed and agreed to postpone this op for a couple of months in order for
me to recover.

So far I feel fine and its still to early to say whether its working but
best give it every chance to work, I was discharged yesterday from hospital
with another re-admission for treatment planned for the 25th of May so a
week on thursday I'll be readmitted to hospital with the second infusion
taking place the following day.
I will keep you all posted on how I'm getting on.

Robert