Essential Thrombocythemia (ET) and viruses

My experience is: I am 72. In 2015 I was diagnosed with ET and came back to USA (from Venezuela, where we were missionaries) for a bone marrow biopsy which confirmed JAK 2 ET. Initially my platelets were 1,250,000. They iitially started me on 5 - 500 mg Hydrea a day, decreasing dosage every week or so after frequent weekly blood work. Currently I am on 1,000 mg daily of Hydroxyurea (Hydrea) and two days a week I take 1,500 mg (three capsules. They check me about every two months with labs at oncology and of course am followed closely by oncologist. In 2015 I had a blood clot behind my R knee under the valve. A year or so of blood thinners did the job. I have not had any blood clots since and am not taking anymore blood thinners at present except for a baby aspirin daily. I also have Bonchiectasis, scarring on lungs from repeated pneumonia years ago, and have had asthma since childhood. I had COVID with few symptoms in 2020, did not take any vaccines, since I felt I had enough clotting issues to deal with, and I have not had any more problems at all. I try to stay in healthy environments, do not use masks unless it is mandatory in some places, and I eat healthy. I take maintenance meds for my lungs, drink lots of fluids (the Hydrea has always caused some heartburn, so I make sure I take it with plenty of water) and try to keep as normal a life as possible. I have had decreased energy but take protein drinks also. Had hip replacement surgery in the last 4 years, back surgery in 2021, all with caution and release from cardiologist, pulmonologist, oncology, etc. since I do present some risks, But I have done well. I have learned that STEROIDS (injections for my back in the years before my hip and back surgeries) and my pulmonary infections, increases platelet production. So, I avoid but when I must have them to get well, they have to increase my Hydrea dosage to allow for that. Just had not heard it mentioned and I did not realize it till recently. Last year, after being well controlled for over 6 years, my platelets went up to 900,000 + hence adding the extra 1,500 mg weekly and now 1,000 mg weekly (1 extra capsule 2 days a week).
Good to have this forum to learn more about what we and others have experienced.

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Teech64,
I cannot imagine starting on 2-3 Hydroxy a day, I had daily headaches taking I am now taking 500 mg every other day and headaches are less. Hope to be able to continue that dosage. I am also on a blood thinner for AFib.
Of course, everyone is different but I feel your body needs to adjust to Hydroxy. Eileen

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I was diagnosed with Essential Thrombocythemia Hemorrhage in 01/2009 during my yearly physical. My doctor prescribed me 500mg of Hydroxy a day and referred to a oncologist. I was examined intensely for about three months. I was 55 then. The oncologist talked to me about my life over many years and took blood panels twice a week. He brought me to tears. This disease would make me ill for short periods and then disappear. I had issues since a teanager, particularly acid indigestion, unexplainable psychological incidents and other odd things periodically. Not often, and I didn't know how to explain it to anyone. The Doctor asked, before telling me the issue ," You thought you were losing your mind ". I said yea, kind of. He said you were not, it was this disease, i cried,. "Everything you spoke about and more it causes". He said some doctors claim they can treat it but can't. It can cause so many different issues they will diagnose them as something else going on when it's not and cause a disastrous situation. . He increased my dosage from I pill a day to alternate with 2 every other day. The pills made me terribly ill and the worse pain in my life. I was having acid attacks. It took time and lots of suffering before it stopped. Now 14 years later I take two a day. My platelet count stay around 300. I have no issues at all. I don't believe the pills do the trick alone. I taught myself to eat a anti inflammatory diet and other foods that work with my condition. I fast two weeks, every four months.( My choice was the Master Cleanse). I am 70 years old , I look as young as 40 , not a day over 50. I got covid at least twice and never had any symptom. My hematologist see me twice a week for immunotherapy support by infusion. I credit the most, WHAT I EAT AND REFUSE TO EAT. I DON'T CHEAT. IT'S NOT OVER NIGHT, IT'S A PROCESS. THERE'S SO MUCH GOOD STUFF THAT'S AS GOOD AS MEDICINE. IT'S NOT A OVERNIGHT THING. TAKE YOUR TIME AND HAVE FUN. IF YOU DO IT RIGHT , YOUR AGEING WILL SLOW DOWN AND YOU'LL STAMINA WILL INCREASE. ONE MORE THING, IF YOU INVEST IN A GOOD ELLIPTICAL. START OUT DOING ONE MINUTE TWICE A DAY, NOT A SECOND MORE. INCREASE IT BY ONE MINUTE ONCE A MONTH, NOT A SECOND MORE, STAY CONSISTENT, WHEN YOU GET TO TEN MINUTES, STAY THERE. YOUR MIND BODY AND SOUL WILL BE FULLY REJUVENATED. YOU WILL ALWAYS BE THE CENTER OF THE CONVERSATION, FRIENDS AND FAMILY WILL NOTICE BEFORE YOU. YOU WILL BE ADDICTED TO THE REGIMENT AND FEELING SO GOOD, HELL YEA. IT'S EASY.

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I am curious as to what foods you eat and what foods you refuse to eat? I am struggling with sweets. Other than that I remain on a very healthy diet.

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My MPV was high so I had very large platelets. I started to take black seed oil and my numbers actually decreased.

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I was diagnosed with Essential Thrombocythemia Hemorrhage in 01/2009 during my yearly physical. My doctor prescribed me 500mg of Hydroxy a day and referred to a oncologist. I was examined intensely for about three months. I was 55 then. The oncologist talked to me about my life over many years and took blood panels twice a week. He brought me to tears. This disease would make me ill for short periods and then disappear. I had issues since a teanager, particularly acid indigestion, unexplainable psychological incidents and other odd things periodically. Not often, and I didn't know how to explain it to anyone. The Doctor asked, before telling me the issue ," You thought you were losing your mind ". I said yea, kind of. He said you were not, it was this disease, i cried,. "Everything you spoke about and more it causes". He said some doctors claim they can treat it but can't. It can cause so many different issues they will diagnose them as something else going on when it's not and cause a disastrous situation. . He increased my dosage from I pill a day to alternate with 2 every other day. The pills made me terribly ill and the worse pain in my life. I was having acid attacks. It took time and lots of suffering before it stopped. Now 14 years later I take two a day. My platelet count stay around 300. I have no issues at all. I don't believe the pills do the trick alone. I taught myself to eat a anti inflammatory diet and other foods that work with my condition. I fast two weeks, every four months.( My choice was the Master Cleanse). I am 70 years old , I look as young as 40 , not a day over 50. I got covid at least twice and never had any symptom. My hematologist see me twice a week for immunotherapy support by infusion. I credit the most, WHAT I EAT AND REFUSE TO EAT. I DON'T CHEAT. IT'S NOT OVER NIGHT, IT'S A PROCESS. THERE'S SO MUCH GOOD STUFF THAT'S AS GOOD AS MEDICINE. IT'S NOT A OVERNIGHT THING. TAKE YOUR TIME AND HAVE FUN. IF YOU DO IT RIGHT , YOUR AGEING WILL SLOW DOWN AND YOU'LL STAMINA WILL INCREASE. ONE MORE THING, IF YOU INVEST IN A GOOD ELLIPTICAL. START OUT DOING ONE MINUTE TWICE A DAY, NOT A SECOND MORE. INCREASE IT BY ONE MINUTE ONCE A MONTH, NOT A SECOND MORE, STAY CONSISTENT, WHEN YOU GET TO TEN MINUTES, STAY THERE. YOUR MIND BODY AND SOUL WILL BE FULLY REJUVENATED. YOU WILL ALWAYS BE THE CENTER OF THE CONVERSATION, FRIENDS AND FAMILY WILL NOTICE BEFORE YOU. YOU WILL BE ADDICTED TO THE REGIMENT AND FEELING SO GOOD, HELL YEA. IT'S EASY.

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I am also curious to what foods you eat & don’t eat. This is my second request.

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