Rituximab Diary

Week 2

Monday here again already – week went by fast.  Not such an early start today as was asked to be at the Day Unit by 10am.  When I arrived Vicky (Haematology Nurse) asked how I had been during the past week.  Explained that I had felt very tired and had been constipated which I had assumed was due to the cocktail of drugs I had received.  Vicky thought it was more likely due to the anti-sickness drug I had received and so this week it was changed.

Canula was fitted and various bloods taken – platelets were a whopping 234 and haemoglobin 13.9 – I am still waiting the results of cleaving protease tests.  Again the paracetamol and piriton were given half prior to starting the infusion.  Obs were taken and the treatment commenced.  Pleased to report that no adverse reactions experienced this week and the rate of infusion was increased considerably so I was all done in 3 hours – result!.  Yet again I spent most of this time dozing, thanks to the piriton!

I left the hospital feeling very tired and the journey home was quite exhausting, but still I have no regrets about having this done in London.

By Thursday of this week I was suffering flu type symptoms, ie muscular aches and pains – I phoned into the Day Unit who advised me to take my temperature which was normal and to take paracetamol, asking me to keep in touch.  I felt no better Friday and spoke with Mike Flynn who suggested I continue with the paracetamol and also take some piriton, he asked me to phone Saturday morning and let him know how I was doing.  Overnight I started to suffer with the chills and shivers and very high temperatures (symptoms very similar to those I experienced when I had line infections) and when I phoned in on Saturday Mike thought it best I get myself to the Unit for a blood test and bring an overnight bag in case I was to be admitted.

Arrived at the hospital and was taken to the ward whereby I was examined by the House Doctor – temperature was high and bloods duly taken – both Andy (my husband) and were extremely surprised and shocked when the results showed that my platelets had dropped to 116 – by that time I knew I was to be admitted.  A further blood test was taken 4 hours later showing a further drop to 87. 

I was closely monitored (every two hours) overnight with the symptoms being treated with just paracetamol – Sunday morning another blood test was taken and platelets had dropped further to 56 – the muscular aches got steadily worse  it was decided to start me on plasma exchange that day and the dreaded steroids.

At this point no one was sure if I was suffering viral infection (my white cell count was high) or experiencing a reaction to Rituximab – it was thought unlikely to be an episode of TTP because my red cells were showing no signs of breaking up.