Rituximab Diary

Week 3

Second plasma exchange on Monday, the hospital decided not to give me my third dose of Rituximab this week whilst treating the low platelet count.

I had five plasma exchanges that week that got my platelet count up to normal levels, however, the hospital kept me in for a further four days to monitor me as my temperature was very high.

It was not know exactly what was causing this.

Week 4

Monday I came from hospital – again no Rituximab this week whilst I was convalescing.  I was asked to attend an outpatients appointment the following week to discuss going forward.

Week 5

Had consultation with Prof. Machin on Monday who still was not sure if I had suffered a viral infection or reaction to Rituximab.  However, preliminary results were showing that the drug was doing what it was supposed to and therefore he wanted to continue with doses 3 & 4, dose 3 to be administered that day.

Went over to the Day unit for the treatment – I had experienced a small reaction which was treated with more piriton and went home, again feeling extremely tired.

By 11pm that evening I was experiencing the chills, shivers and very high temperatures – I telephoned Mike Flynn early on Tuesday morning who advised me to come to the Haematology Units.  The severe muscular ache started again, bloods were taken and fortunately my platelets were fine – it was agreed that I was reacting to Rituximab and that I was to be admitted to be monitored and treated with oral antibiotics – fortunately my platelet count remained stable and I was able to come home again two days (Thursday) later.

It had been confirmed that I had developed an allergy to Rituximab and therefore the decision had been made that I was to be given no more of the drug, however, initial test results were showing that the three doses I had had appeared to doing what they should and I was asked to attend clinic just over a week later to have further bloods tests.

Week 7

Attended clinic and had bloods taken.  I then met with the team who were pleased my progress and confirmed that despite the reaction I had suffered the results were showing that the Rituximab had done its job with my b cell count fallen to 0.002 and my cleaving protease level at normal.  If this continued (and there is no reason why it shouldn’t) I was advised that should be able to try for a baby in May or June of next year.  I am to be monitored monthly until then.

It’s obviously not great being in hospital (although the care I received was excellent), however, from my point of view it has all been worth it as the results are indicating we can try for a family and therefore I have no regrets about having the Rituximab and would recommend that any TTP sufferer offered this treatment should seriously consider taking it.