On a Friday evening in June 2023, age 62, I experienced a sudden loss of vision in my left eye. It lasted about 20 minutes. There was a similar but shorter experience the following evening. I saw my optometrist on the Monday as I assumed this was a return of retinal detachment issues I had previously experienced. She gave me a thorough examination and said to see a GP immediately as there was nothing wrong with my eyes and episodes of vision loss needed prompt investigation.
I saw my GP who looked back over my records and noted a slow increase in my platelets. She ordered blood tests, including a blood smear. The pathologist contacted the GP and suggested I have a Jak 2 mutation test as the blood smear had shown many irregularities in my platelets.
Within a few days I had a haematology appointment. Even though the Jak 2 result was not yet available, my haematologist was confident I had ET. I was also experiencing fatigue and dizziness, tingling in my extremities and either extremely cold or hot burning feet. My left foot obliged by suddenly putting on a very good show during this first appointment.
The Jak 2 test did come back positive, and I began treatment of Hydroxyurea and baby aspirin in August 2023.
In early 2024 I retired early from my full-time job. This was a difficult decision as I had worked in a wonderful school for 26 years. However, it was a very demanding job, and I felt I could not adequately care for my health and continue to work. Ultimately this was the right decision.
I have responded well to treatment. This includes a walk most mornings and a nap every afternoon, at times having to acknowledge that some days I don’t achieve very much if I have had a bad night and am particularly exhausted.
Two side issues arose during 2025.
Erythromelalgia
The first was a growing tendency for my ears to overheat, becoming vivid crimson and painful. One some occasions this could last for some hours. Sometimes it also happened on my cheeks. I mentioned this to my haematologist and asked if it could be Erythromelalgia, a known but rare side effect of ET. He felt this was unlikely. However, the more it happened, I kept a diary of when it occurred, how long each occurrence lasted etc and took photos of the most extreme events. When I showed this evidence to my haematologist 6 months later, he instantly agreed and suggested I take a second aspirin each day. Although the Erythromelalgia will never go away, at least I understand what is happening and I am getting better at trying to modify my body temperature and that of my environment. This seems to be helping.
Dental issues
The second issue was a sudden case of 3 dental cavities in 6 months. Having had no cavities for 50 years, I knew something was wrong. My dentist explained that some medications and patients who require a lot of hydration can experience changes to the Ph of their oral biome due to electrolyte imbalance. He gave me a daily regime of specific oral care, tips for electrolyte improvement and a couple of extra dental products. I was very relieved after 8 months to hear that my teeth are now much better. I will of course have to maintain this regime (everyone needs a hobby!). I also discussed this with my haematologist, who acknowledged he had never heard of this as an issue. On further research he acknowledged it could indeed be an issue, although quite rare.
I have been so grateful for the support, knowledge and friendship of the Canberra MPN Group. Without them I would have felt very alone.
