ET under 50: I’m always the baby in these groups.

Hi @milestogo Although it is more common for people over 50-ish to develop blood conditions such as essential thrombocythemia (ET), it can happen earlier as in your case. But you have had a rocky road for sure, especially being on 2000 mg of hydroxyurea daily.
From my understanding, doctors will often reduce the medication to the lowest effective dosage once the targeted platelet level is reached. That can be helpful with mitigating many of the more serious side effects.
Are your platelet levels at a normal level now?
Has there been a re-evaluation of your condition lately to modify the dosage?

@loribmt I get a cbc monthly and my platelets hover in the 400’s. Any decrease in dosage and they shoot up rapidly and dramatically.

Hi @milestogo Then it’s best not to mess with success…
Do you recall, when you were diagnosed, if there was mention of a genetic mutation such as JAK2, CALR, MPL?

@loribmt yes I had a bone marrow biopsy which showed both a CALR and a JAK2 mutation.

Hola @milestogo, yo tengo actualmente 43 años y me diagnosticaron a los 33. Desde ese momento comencé a tomar hidroxiurea, actualmente tomo 2 comprimidos diarios 6 veces x semana y 3 comprimidos el día restante.
Los principales síntomas q he tenido son la fatiga constante y un aumento considerable en la caída del cabello.
También tuve insuficiencia ovarica prematura a los 38 años (tengo mis dudas si no se debió al uso de la hidroxiurea).
En fin, no estás sola, ni sos la más joven, jeje je.
Saludos y a las órdenes!!

@milestogo, along with @vivoconte, I'm tagging a few other "babies" like @tinak123 @nancyra and @lynnevb who were diagnosed with essential thrombocythemia (ET) before they were 50.

@colleenyoung thank you!

Just a thought: Have you talked to you doc about Besremi? It's an interferon injection they give usually to younger patients who have trouble with hydroxyurea. It does hold out the possibility of reducing the severity of the disease. If you live in the US, it is very expensive, but if your doc goes to bat for you with insurance or you can get a hardship grant from the pharma company, it might be worth asking about.

@nohrt4me, soy de Uruguay y por el momento Besremi no está disponible en mi país.
Saludos.

Use otro interferon durante 5 meses cuando recién me diagnosticaron porque quería poder amamantar a mi bebé, pero no toleré los efectos secundarios.
Abrazo.