My ITP Experience by Ian Salter

My ITP Experience by Ian Salter

(First published in the Platelet March 2016)

At the time I first was diagnosed with ITP I was a sixty-four-year-old male, newly retired and enjoying living part time in Cyprus and part time in the UK.

I was in Cyprus when I noticed bruises on my arms and legs. I thought it was due to over enthusiastic DIY, but the bruising persisted and on my return to the UK I rang up my GP. She suggested a blood test. I offered to ring the health centre on the following day to arrange an appointment with the nurse. Instead, the Doctor wanted to know how quickly I could get to the surgery as she wanted the test done straight away. This started alarm bells ringing. Our health centre doesn’t do immediate appointments.

As the nurse was taking the blood the inside of my arm from elbow to palm turned black. “How long have you had that” she asked, “only since you put that needle in” I replied. She rushed off to get the Doctor.

I was sent home to await the results of the blood test and two hours later received a phone call from the Doctor. “Your platelet count is quite low, and we want another test to confirm it. We would like you to go to the hospital straight away for another test”. By this time, I was becoming very suspicious, should I take an overnight bag I asked, “Yes just in case” was the reply. Doctors are the masters of understatement.

On arrival at hospital, they showed me to a bed, I wondered why I needed a bed for a simple blood test, but all became clear. They took the blood and shortly after that a doctor arrived, He explained that in a normal person the platelet count is between a hundred and fifty and four hundred and fifty, mine was three. I was to stay in bed and not go anywhere as a fall could cause a haemorrhage. Luckily, I did not need the loo.

A nurse arrived and connected me to a drip that gave me intravenous platelets and I began to resign myself to a long stay.

I spent the following week in a medical assessment unit undergoing numerous tests which happily ruled out things like leukaemia and prostate cancer. Finally, the doctors told me that I had ITP. “IT-what” I responded, I had never heard of it. Nearest thing I had suffered from was PMT and that was second hand!

They gave me sixty milligrams of prednisolone per day with no mention of the side effects, but a promise that when my count reached twenty, I could go home.

I started to learn some of the side effects of steroids. When some friends visited me, they kindly left an enormous bar of chocolate, one of those Cadbury Dairy milk things that are about a foot long. The following day when they called, it had all gone.

Lesson 1: Steroids affect your appetite.

We were due to move house in two weeks and between hospital visits, my wife heroically organised removal men, packing and contacted numerous utilities whilst I was unrealistically relaxed in hospital, feeling quite high. Lesson 2: Steroids affect your mood.

After a week my count had reach fifteen and the doctors decided I could go home on the strict understanding that I did not lift or do anything that could risk injury.

Not easy when you are moving house.

The family rallied round and came over to do the final packing and get us moved. For a laugh my grandchildren made me a suit of bubble wrap to protect me during the house moving. I began to suffer from cramp in my legs and my hands would go into spasm causing me to drop whatever I was holding. Lesson 3: Steroids cause muscle cramps.

I was treated as an outpatient in the care of the haematologist at our local hospital and over the following three months my count rose to one hundred and fifty, whilst the steroid dose was reduced. After a year the steroid dose was down to one five milligram tablet every other day but within a month my count had fallen to fifteen.

Over the next five years I was given numerous treatments. Cyclosporin had a marginal effect on my count and my kidneys began to suffer so that treatment was stopped.

Rituximab (low dose) combined with steroids maintained my count at about fifty for several months until the steroid dose was reduced to five milligrams per day at which time the count fell.

Mycophenolate had little effect on my count which remained in the twenties. Intravenous immunoglobulin caused a bad reaction with flu symptoms and high blood pressure.

In Aug 2010 I was given a larger dose of Rituximab combined with steroids. This raised my count to one hundred and fifty. The steroids were gradually reduced and in June 2011 were stopped altogether, by August my count had fallen to twenty-nine.

Splenectomy was suggested, I was told there was a seventy percent chance of success. I agreed and the operation took place in October 2011.

Initially my count rose to over four hundred but once I stopped taking steroids it fell and by January 2012 it was at thirty and the haematologist concluded that the operation had not worked, so back on the steroids.

I was referred to the specialist at Manchester where I was subjected to numerous tests.

Dapsone was prescribed for two months, whilst reducing the steroid dose, however once the steroids stopped my count fell rapidly.

In October 2012 my count was sixteen and I was taking steroids when I started injections of Romiplostim. Within nine days my count had risen to six hundred and thirty-two and the steroids were stopped. Over the next twelve days my count fell to four and the steroids were restarted.

This up and down pattern continued for the next three months with my count reaching over six hundred following each injection but then falling to single figures.

This finally stopped in March 2013 when the rate at which my count fell eased and it levelled off at about two hundred and fifty where it has remained ever since, without the need for steroids or Romiplostim.

Hopefully, (it is not easy to type with your fingers crossed) this remission will continue.

So, if doctors tell you that there is no cure for ITP they may just be wrong.