Living life feeling like a pioneer! By Sue Weall

Updated on
by mervyn

My ITP journey began in February 2021 with my first Astra Zeneca covid vaccination. I felt unwell 10 days later and after a phone chat with my GP, I shared photos of my mouth blisters and went for a blood test. Results showed my platelets were at 6 and I was swiftly admitted to Poole hospital. My reaction to the vaccine was yellow carded in March 2021. Weekly care for my ITP has been from Poole Hospital, University Hospitals Dorset NHS Foundation Trust (UHD), my Haematology Consultant Dr Ram Jayaprakash and my team of a specialist pharmacist, nurses, and phlebotomists.

After initial local hospital interventions in 2021 and my introduction to steroids, I started Eltrombopag This did not last long as I experienced headaches and severe nose bleeds after less than a week, then was changed to Romiplostim. I had increasing doses of Romiplostim from April 2021 – February 2023, initially at Poole hospital for 10 months than self-administered at home but with many side effects, including granular dermatitis over half my body. Dosage was increased incrementally whenever platelets fell dramatically. Side effects increased to a level which I was finding difficult to live with, including muscle & joint pain, low moods.

Dr Jayaprakash referred me to Dr Nichola Cooper (Imperial College Healthcare NHS Trust) later in 2021 and I first saw Dr Cooper at her ITP Clinic (Hammersmith Hospital) in January 2022, and now every 6 months.
Dr Jayaprakash and Dr Cooper agreed in February 2023 to try me on 100g twice daily on a drug new to the UK, Fostamatinib. My blood pressure gradually increased over the next month and reached 210/110. Then blood ulcers appeared in my mouth and nose bleeds started daily. I felt unwell with a sore throat but tested covid negative with lateral flow test at home. Went to Poole Hospital for a blood test, found my platelets had fallen to 7 and I was surprised to be positive for covid when tested for admittance to a ward.

I was the first person in Dorset to take Fostamatinib and few people in the UK are on the newly licensed drug. So, I feel like a cross between a pioneer, and a guinea pig, as consultants and teams increase their clinical experience. I have never met someone with ITP, face to face and it is quite an isolating disease as so rare. When you can try a new treatment, you become the local patient expert. I am hoping to get to the ITP Support Association Convention in 2024, Online was a valuable learning experience for me in 2022.

After in-hospital treatment March 2023 with covid isolation including steroids, blood pressure medication, I gradually recovered from Covid. Restarted Fostamatinib once daily 150mg (rather than twice 100mg) from early April. Some symptoms, side effects but other meds were, in the mix, and weaning off steroids. Platelets rose whilst on steroids but afterwards, kept falling even with Fostamatinib so weekly doses of Romiplostim added back in but only 200mcg/0.4. Combination not great to live through most weekends but hopeful things will improve. Ongoing experiment to find a balance and by mid-May my platelets had gone up to 215.

Diarrhoea was a problem by end of April, five or six times a day, and diarrhoea relief medications made me feel very dizzy, headaches, and generally unwell. So, a short break from Fostamatinib, but continued with Romiplostim and then reintroduced Fostamatinib at a low dose of one 100mg in the evening rather than the morning. Ongoing experiment, ongoing pioneer but seeking a balance in my life so that I get the freedom to leave home and engage with family and friends more consistently. Small victories and achievements count much more than in the past. I’m hopeful that things will stabilise soon.

For all of you and your ongoing treatment, surround yourself with people who will encourage and support you, try to understand your unpredictable life filled with numbers that rise and fall, lift you up when it gets hard and have fun together whenever possible.

My story goes on, and perhaps from where I was in February 2021 that is my success story!

Sue Weall, 67 years old, Poole, Dorset, UK