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

I am 73 years old, diagnosed with Polycythemia Vera last August. Hdroxyurea treatment started with 500mg per day, then went to 1000mg, and currently at 2000mg per day. I go in this Wednesday for blood work. I'm praying that my hematocrit level is below 45. Then maybe the doctor will reduce the Hdroxyurea.
I have always shook the pills into the cap, had water ready, tipped the pills into my mouth was washed them down with water.
My understanding about the Hdroxyurea is that it is more important that no one but you handles the medication.
I have never questioned taking this med. It has been proven to work.
They also tried unsuccessfully, to do phlebotomies in both arms a few weeks back. The blood would start, but was just too thick to continue.
The only side effect I have noticed is fatigue. Which is part of the disease, but I also think from the high dose of Hdroxyurea.

@leene808 que dura se hace a veces la fatiga! Y la niebla mental, a veces siento que soy "más lenta" en cuanto al razonamiento. Yo tomo 2 comprimidos 6 días a la semana y 3 comprimidos el día restante. Siento que es demasiado, lucho cada día con el hecho de tener que medicarme..
Abrazo grande y gracias por tus palabras.

@vivoconte It amazes me far reaching this disease can occur. I am glad you connected with Mayo Clinic. There is so much to say about how I felt being on HU for so many years. Some days I would look at the medication as a end to a life, but then as time went on and I was doing well with what seemed to be no symptoms, I accepted that it was actually a life saver for me. It is new to me now that I am NOT taking HU. I am sensing less fatigue all of a sudden, and better sleep, and I seem to be thinking better. The question now is - was I not myself while taking HU? Or is this a placebo effect of not taking it? Besremi is given by injection once every 2 weeks. It is odd to me - to not take something every day that depletes my bone marrow. How will this make me feel? Will it really work? The side effects always sound so much worse. They send you a box of loperamide (antidiarrheal) with your first dose. :Q I have not had that problem and its been only 3 days. I have not felt any side effects, but the first dose is very low only 50mcg. The treatment is actually much higher 200 or 300 mcg every two weeks. They start you out slower. I will see how I feel in a couple months. Most common side effects are Flu like symptoms, tiredness, weakness, fever, chills, muscle aches and joint pain, itching and sore throat. Less likely but more serious side effects exist. I would do a search on this so you are fully aware. For me, I just want to know if this will extend my life, longer than being on the HU. I've been lucky I guess, and feel like I have had my time on earth, so I don't have anything to lose at this point. Love and health to you my friend.
leene

@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.

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

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

@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.