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

@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!

@leene808 a que edad comenzaste con la hidroxiurea?

@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.

@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.

@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 ?

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.

@anavleek I have been taking HU for over 30 years and never had a problem. I pick it up all the time and place it on my tounge then get some water. Maybe I have just gotten used to it. My platelets need to stay under 500K and this week I start on my Besremi injections so I will say good by to HU. It has been a lifesaver for me for so long. Embrace the drug so that it does what you need it to do. None of us expected to end up with these bone marrow proliferations, but the treatments will keep you from having a stroke, which is much worse than the side effects. Good luck and take good care! leene

No symptoms so far, but it has only been one month on Hydroxyurea.
Praying your doctor will find the right meds for you to relieve your side effects.

Last few weeks , I have been suffering with headaches, nausea and the fatigue has worsened, still on interferon and Aranesp injections, is it likely my mpn ET is progressing , will see my haematologist next week, anyone experiencing similar problems

Thank you for the information....I am praying for all who are going through this disease. God bless you!!