My ITP Story – Linda Willis

My ITP Story by Linda Willis

I thought you might like to have an update:
Following my published story in 2016 (see below) I have continued on Romiplostim as my treatment. After further adjustments to dose and interval I now have a home injection of 250mcg every 10 days and my count is around 140 so near the lower end of normal. I am still symptom free and have had 3 surgeries in the intervening years without additional need to raise platelets beforehand.
I send all ITP patients best wishes and the best possible quality of life as they are treated.

This is Linda’s original story from 2016. (First published in the Platelet June 2016)

When I was first diagnosed with ITP it was August 2010, and I was 62 years old. Whilst on holiday in Italy I noticed a lot of bruises which I put down to clumsiness, and bleeding gums which I thought was a dental problem.

When back home I went to my GP for a routine blood test form for the blood pressure medication I was on. Having had the blood taken, we set off on the bus to do some shopping and had a pub lunch. When we got home there were numerous answerphone messages asking me to contact the surgery at once. A very concerned GP said my blood results needed to be repeated, and that I should go immediately to the Haematology department at the local hospital who were expecting me. It turned out that my platelet count had been 1, and was the same when repeated.

I was told not to move too much and admitted to hospital. I was started on Prednisolone, and after a bone marrow biopsy which confirmed diagnosis, I was discharged 5 days later with a count of 7.

I was monitored as an outpatient every few days and then weeks. My response was good at first, although I was awake most of the night, was permanently ravenous and started to gain weight.

In January 2011 I relapsed, so treatment changed to Azathioprine with a poor response. This was followed by Dexamethasone but I couldn’t tolerate the side effects. I then had intravenous Rituximab.

By November 2013 my platelets were still low, with bleeding, and I had gained over four stone in weight. It was suggested that I take one of two options – splenectomy, which I declined, or Romiplostim. We had a couple of lessons from the Nurse Specialist on the injections and began doing them at home, my husband becoming very skilled at preparing and administering.

It took a lot of ups and downs and dosage adjustment but I now have 500mcg every 6 days. We had to buy an extra fridge to accommodate the supply of Romiplostim! It is not without side effects – headache, muscle and joint pain – but these are usually only for 24 hours and can be relieved with strong painkillers.

My count is now 10-20 at it’s lowest point and 30-45 at best, although this may not be entirely accurate as manual examination of my blood film showed some large platelets, and these are unable to be counted by the analysis machine. However, I am symptom free and able to enjoy life.