My ITP Story – By Janet Millard

My ITP Story.

By Janet Millard

My name is Janet Millard.  I live in West Sussex and at the time I became ill I was 63 years old. My story starts in July 2017. I had been for a routine blood test at the GP Surgery on a Thursday in early July. The next day I woke to find a strange rash across my chest, but as it was a very hot day, I put it down to the heat.  As the day went on the rash progressed to other parts of my body, including legs and arms.  Baffled but not unduly alarmed, I carried on in on as usual until early evening.  On using the loo, I noticed I was losing blood, quickly followed by coughing up some blood.  Now the rash had progressed to round my neck and I was starting to feel unwell.  My family took me to the Accident and Emergency Department, where they diagnosed ITP.  My platelet count was down to 8. When the doctors looked at the blood test, I had done the day before, the platelets were in normal range, so they had literally dropped over night.

I spent the next week in hospital as my platelets dropped to zero on the Saturday night. I had a severe nosebleed that lasted for twelve hours and ended up being anaemic.  The steroid treatment I had been put on wasn’t working, for three days my platelet count refused to rise. I had three platelet transfusions, but my immune system kicked them out as fast as they went in, the doctors said I was like a leaky sieve.  By Wednesday my platelet count had struggled to 4, so It was decided to try a drug called intravenous immunoglobulins. Thankfully this worked, my platelets started to rise and by the following weekend rose to 26, the bleeding had stopped, and I was allowed home.

I had regular checkups at the haematology department, and the steroids finally kicked in and my platelets were now in normal range. After three months the steroids were stopped, and the platelets remained in normal range for four months.  I woke one morning to find bruising and a rash appearing, but thankfully this time no bleeding. The platelet count was first zero, then 17 followed by 26 before I had any treatment.  The platelets had started to rise on their own accord, so the doctors decided to give no treatment but monitor me closely. The platelets kept rising slowly and five months later in June 2018, they had reached 114.

A week later after the platelets had reached 114, I woke one morning to find bruising and a rash, I also felt very unwell, but still not bleeding. As it was a weekend I waited to the following Monday as I knew there was a haematology clinic at the hospital on that day.  When they checked my platelets, they were down to zero again. I was treated with a high dose of steroids and three months later these were stopped when the platelets were in a safe range, I was put on Mycophenolate mofetil, an anti-rejection drug, 500mg a day.  I have now been well for the past eighteen months, the Mycophenolate mofetil is still working well and the platelets are in normal range.

The latest news is that the doctors are now considering weaning me off the Mycophenolate mofetil to see if the ITP returns, or I remain stable.  They hope the immune system has been ‘tricked’ into not rejecting my platelets, but time will tell, and they can never say that the ITP won’t return.

Janet Millard, Crawley West Sussex.