Thankyou for your reply, do you mind me asking what med you changed to, and did the Hydroxycarbamide affect you from the start. I’ve been taking it for three and a half years and seemed to be okay at first. But my rbc has just got lower and lower and the nausea started a few months ago. I’m thinking I need to be armed with as much info as possible when I see the oncologist. Thankyou again 😊

Thankyou for your help 🥰

Thank you for asking, Jean2.
I was prescribed Hydroxyurea (HU) at alternating doses of 1000 mg and 1500 mg per day, and I took it from January to August 2025. After about a month, I began experiencing noticeable side effects — painful mouth ulcers appeared, and my blood tests showed a drop in both red and white blood cells. I also felt increasingly fatigued over time.
Due to those effects, I recently switched to Anagrelide, at a dose of 10 mg per day. During the first 7 to 10 days, I experienced some dizziness, but after that, my body started to adjust. I’ve now been on Anagrelide for about a month, and things seem to be going better.
I completely understand your concerns — it’s especially frustrating when new symptoms arise after years of treatment. Gathering as much information as you can before speaking with your haematologist is definitely a smart move. Wishing you strength and clarity as you navigate your next steps. 💙

Jean, another point to consider...MPN patients who are stable have appointments every three to six months. From what I learn from forums, every three months is more common. Additionally, one of the side effects I was experiencing from the HU and one reason I had to stop the treatment was nausea.

Hi Jean2,
I'm also diagnosed with essential thrombocythemia (ET). I was initially prescribed Hydroxyurea (HU), but unfortunately I had to stop taking it due to the side effects. It didn’t only lower my platelet count but also significantly reduced my red and white blood cells, which left me extremely fatigued and prone to infections.
Like you, I experienced overwhelming tiredness, frequent illnesses, and just a general decline in my well-being. After consulting with my haematologist, I’ve since switched to a different treatment and I’m starting to feel a bit better now.
It’s definitely a tough journey managing ET, and I can relate to your concerns. If you're wondering about TIA (transient ischemic attack), it's definitely something worth discussing with your doctor, especially if you're experiencing neurological symptoms like burning or tingling sensations.
Sending strength and hoping you find a treatment that works well for you.