Rituximab Diary

After eight months of discussions and waiting I was pleased, and more than relieved, that funds for treatment by Rituximab had been made available by my local PCT and following discussions with the Haematology Team at UCH the treatment was to start on Monday the 20th September.  This treatment had been recommended as my husband and I desperately want to have a child and with my enzyme level as low as it is I have been warned not to even try for a pregnancy as it would trigger another episode of TTP and all the complications associated therein.

Rituximab is a drug belonging to a group of drugs called Monoclonal Antibodies.  It was first used to treat several types of Non-Hodgkin’s Lymphoma but has been found to be useful in treating certain types of auto-immune conditions, eg. TTP, ITP.  It works by reducing the number and activity of B-cell lymphocytes thus it may decrease the production of the inhibitory antibodies to ADAMTS 13.

It is important to note that this treatment is not a cure, however, offers the likelihood of a prolonged remission.

This is my diary of my experience of the treatment.

The weekend prior to my attendance at the Day Unit I was not particularly worried or anxious about the treatment – I had been advised that it is administered in 4 doses over a 4 week period via an infusion.  Quite frankly after all I had been through during my acute episode of TTP this was going to be a walk in the park!

Week 1

I had been warned that Day 1 would be a long day, however, I arrived at the Day Unit at 9am raring to get this going. 

Firstly one of the nurses took my weight and height to pass to Pharmacy who would make up the correct dose for my measurements. 

I then had a chat with Michael (Mike) Flynn, the Clinical Nurse Specialist Therapeutic Aphaeresis, about Rituximab and its use in treating TTP.  He advised me again on how the drug was administered, the possible side effects I could experience, most of which would more than likely be flu like symptoms.

I was taken to my bed on the day unit and a candula inserted to my right arm.  I was given tablet paracetamol to combat any rise in temperature, liquid piriton to combat any allergic reaction and some anti-nausea as I had experienced nausea with previous drugs.  My blood pressure and temperature was taken and charted.  Blood tests at this stage were not necessary as these had been taken during my clinic appointment 5 days before.

After ½ hour at approximately 12.30pm,  the infusion of rituximab was started.  Initially the rate of infusion is very slow, after approximately ½ hour my obs. were taken again and the rate increased.  This process continued for about an hour, however, on the third increase I had an reaction – itching all over.  The infusion was stopped and hydrocortisone and more piriton administered.  Once these drugs had had time to calm down the reaction the infusion was started again, but slowed down.  Again the same process of obis. and rate increase continued.  The infusion was finally completed, with no further reactions, at approximately 6pm.  I had spent most of the afternoon dozing (one of the side effects of piriton, I suppose) and therefore felt quite relaxed by the time it had finished.

The first dose of the treatment has left me quite tired and drained and I have been warned the suppression of my immune system will now have started so I need to try and avoid colds, flu and other viruses/infections.