ITP Patient Stories, News

An ITP platelet journey & avatrombopag story by Christian Dewar Durie

An ITP platelet journey & avatrombopag story.

As someone who has been lucky with health and not used to feeling unwell ITP came as a considerable surprise. My trips to hospitals had been for falling off my bike – aged six – appendicitis at eleven, tumbling off ponies a couple of times and then smashing and bashing bones, cartilages and ligaments from skiing – water and snow. So, the appearance of unexplained bruising while on a not very active holiday was a surprise. I had been in the States in North Carolina with my niece and our family and we had also been in the Blue Mountains for a Highland games gathering. I became very concerned about the extensive and ugly bruising that appeared on my legs. As soon as I returned to England I went to my GP. After many tests, some private on my travel health insurance but for which I had also to pay over £ 1,000 extra, a platelet count of 81 was reported and my GP sent me to Chelsea & Westminster Hospital. Dr Andrew Godfrey in the Haematology Department saw me and noted that my count had been tested in 2014 and although below range at 89 no one had ever informed me! No matter. I had a bone marrow test and was diagnosed with ITP and have been with Dr Godfrey ever since. For a few months my count diminished further and was in the 30-40s. Since then, he has tried all the usual medications, infusions, steroids, etc. So: I began with dexamethasone, then IVIg, mycophenolate mofetil and then mycophenolate mofetil + dexamethasone. Eltrombopag was discussed at length, a pill a day for ever but it has many dietary restrictions and it is difficult to obtain funding for it. I was not keen. Then I had rituximab with mycophenolate mofetil, weekly for a month. None of the medications touched the platelet count or if it did only for a very few days and my reaction to low dose steroids was to be unpleasantly ‘Flying HIGH’!

In fact, despite treatments, my count just decreased and decreased so I was averaging around 10. I started to learn about this strange blood condition and the spontaneous bruising and tiredness that came with it. I joined the UK and USA Facebook pages and the ITP Support Association. I realised I was incredibly lucky. Although there were quite lengthy times when I was extremely tired and very low, unlike others with counts as regularly low as mine: 3 – 5 – 10, I was not languishing in hospital with dreadful blood blisters in my mouth. I have been leading a more or less normal life for a seventy-five plus year old while taking care not to ‘overdo things’. I can take good mountain walks and eat with all the family whenever meals happen in whatever country we are in. Access to the information supplied in The Platelet and its various extra publications has been very helpful – especially regarding travel.

In spring 2019 I had cryotherapy for four small but irritating areas of Seborrhoeic Keratosis. I reacted badly. It caused large blood blisters which had to be professionally dressed every two days for several weeks and left scars. I had IVIg prior to a biopsy and felt dreadful for several days and my count was right down again before the end of the week. I had another bone scan in 2020. If I was concerned about any bleeding I had tranexamic acid always with me – but hardly ever had to use it except when I had a head cold with a nasty cough. I had to be admitted to hospital just once with a virus when I was coughing blood and my count was 4, I was discharged after two nights. The next time it happened – when I contracted COVID 19 – I just stayed home and quiet, taking the tranexamic acid. I regularly had spontaneous bleeding from the Seborrhoeic Keratosis – of which I have many (I had been a fair-skinned redhead and reportedly a ‘slow healer’) – but these incidents were only annoying and messy. On another occasion I had extensive petechiae on my legs, even though I had tried to keep very well covered through the summer and applied strong sun protection as advised by the Dermatology Department at the hospital.

At the end of 2022 with no treatment for the ITP having any lasting effect many of the other alternative medications were discussed:  romiplostim and fostamatinib – which was about to be approved by NICE – and eltrombopag again. I was still against eltrombopag because of the very complicated dietary directions you have to follow. Having been highly allergic and intolerant to many foods for many years earlier I was very reluctant to have to think again so much about when and what I was eating and what was in it and how long ago I had eaten whatever… I could not see how I would manage with my not very organised, if not erratic, life-style.

My body’s lack of response to the usual treatments led, in the autumn of 2022, for Dr Godfrey to refer me to Dr Nichola Cooper at Hammersmith/Imperial. I saw her and her assistant Dr Hart. There had been some discussion whether the blood pressure pills I was on were having any detrimental effect so it was decided I should stop them and then after three months start romiplostim. In December I also enrolled on the Hammersmith-Imperial ITP Research Programme.

Stopping the blood pressure pills made no difference. The overall outcome was that it was decided that I would start self-injecting romiplostim in January 2023, controlled dually by Chelsea & Westminster and Hammersmith. Dr Cooper’s team would have oversight of it. In December, however, avatrombopag was approved for treating ITP. Dr Godfrey changed the plan for me and I started 20mg per day of avatrombopag at the end of January but only for two weeks as no more could be obtained. Then early March I recommenced and have been on it ever since. No side effects. My count yo-yos a bit (immediately up to 23 then up & down, a bit of a roller coaster: 72-37-126-47-29-173-34-47) but for the last couple of months more or less ‘stable’ around 47-54-69.

I am so very lucky. ITP has had far less effect on me and my life than it does for many people. Good Luck to all others. If you have tried many treatments without success maybe avatrombopag will help you.

Christian Dewar Durie