Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

I was diagnosed with ET with Jax 2 mutation, mild myelofibrosis, a year ago after a few years of elevated platelets and symptoms of unexplained fatigue, headaches, puritis. My platlets were 600. I have other risk factors. I am 66 years old. I was diagnosed after being sent to Hematologist and having multiple blood tests and bone marrow biopsy. I started on Hydrea 5 weeks ago, 500mg a day. I will get blood work and see my Hematologist next week to see if I have any improvement and if I need a dose adjustment. My fatigue and headaches have improved since starting HU. I have had intermittent mild nausea, irritation in my mucous membranes which is better with using Biotene mouthwash. I do take the HU with a mouthfull of water and drink a full glass of water after. FYI the medication bottle does warn not to touch the medication and to wash your hands after touching the bottle. I keep my bottle in a plastic baggie. I too was anxious starting the HU, but I am getting use to the fact. This diagnosis can be isolating as it isn't a common diagnosis. The forums do help not to feel so alone in this.

@leene808 thank you for sharing. I have seen a specialist with ET at USC. Right now she said I’m good with the aspirin, but when I am 62 in February she suggest I get a bone marrow biopsy just to make sure I have what they say I have and then get on meds. We discussed the meds and I feel I’d like to get on interferon . Why did you change your meds now ?

@janemc After taking 500mg HU 2 x day for about a month, my Platlet count is down to 300 from over 800. I was quite pleased as was my oncologist, who is now asking for blood analysis once a month and expecting that to be quarterly if the monthly counts remain in the 'normal' range. I guess I am now in the 'acceptance' stage of dealing with this disease. Thanks again to all who have posted info.

@anavleek Need a break from the HU and Besremi will work on my potential to develop a resistance to HU after so many years. I also am having the beginning of PV, at least my blood work shows some changes that made my hematologist recommend it. Starting to have some heart problems, as it relates to ET ? maybe, numbers are showing some heart failure. Just trying to hang on as long as possible. I am 67 now and was diagnosed with ETJAK2 when I was 32.

@leene808 a que edad comenzaste con la hidroxiurea?

@leene808
Just want to say your posts are inspiring and reassuring to me and probably to many others of us who have been recently diagnosed with ET. Thank you!

My prayers and best wishes for improvement in your new issues and for good health on your new meds. God bless you!

@vivoconte I started at 32. I am now 67💕

@leene808, gracias me interesa conocer tu experiencia. Yo empecé con 31 años y tengo 42.

@vivoconte I was able to raise two kids have a marriage go to nursing school get a job at the hospital worked long shifts then change to home care continue to provide nursing care to the elderly in their homes. I stayed on hydroxyurea 500 mg once a day took very little aspirin made me bleed so I didn’t take that but maybe once a week I always wondered when the use of hydroxyurea would cause me to have problems. I am starting to have heart failure now so as of this week, I switched to injections of besRemi. I take this every two weeks for as long as I can afford it and I’ll see what happens. It always seems like I’m waiting for another shoe to drop but so far I think I’ve done OK eating healthy, keeping some exercise and staying hydrated. I get a lot of sleep and I think that helps. There’s hope for a very long and happy life. You are young just like me when you were diagnosed. I’d always hoped that there would be someone who could come up with a cure by now, but you might be lucky enough by the time you’re my age to find that good luck and I hope you do well over the coming years. You’ll have plenty!!💕

@leene808 gracias por tus hermosas palabras de aliento. Intento no pensar mucho en la enfermedad, pero me resulta difícil en determinados momentos no pensar cuando aparecerá algún síntoma más grave.
Me gustaría que cada tanto me mantengas informada sobre tus avances con el Besremi. Yo soy Uruguaya y por el momento aquí no está disponible, pero me interesa mucho conocer sobre este medicamento y que en algún momento sea una alternativa..., que efectos secundarios tiene? Es menos dañino que la hidroxiurea?
Saludos, abrazo.