Essential Thrombocythemia (ET) and viruses

I agree. It took my body a year to stop the side effects. Some were worse than others....I'm in year 4 now.

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.

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

During a 5th spine surgery at age 79, I was diagnosed with Jak2 mutation. My platelet count mid 700s. Have gone through all five oral chemos available for thrombocytosis over 4 year period. Side effects were extensive with all from nausea, headache, constipation, weakness, fatigue, weight-gain (10% increase), dizziness, extreme skin dryness, extreme skin cancers and itching beyond belief. I decided to give the ol' body some chemical relief and literally stopped taking anything for a period of 4 mos. Finally experienced feeling great again. Physician recommended trying low dose of Jakafi 10mg twice a day. Results have been wbc, rbc and platelet count(441) returned to normal ranges last six months, with minimal side effects, i.e.- very dry skin, maintain weight gain of 10% even with excellent healthy low caloric diet.

Hi Victoria. My heart skipped a beat when I read your post, specifically about the "bone pain in shin". In 2022, joint pain went into overdrive. But in past 2 months, both shin bones are very painful even at night when trying to sleep. I haven't done anything different so no explanation there. I've told my Internist a few times. She ordered bone density = normal. I have severe iron deficiency anemia and get infusions every 3 months or so (unknown cause). I also have shortness of breath, but that's usually from IDA when my iron has crashed. The bone pain is worrisome! I'm used to joint pain with osteoarthritis but never bones. I need to Google your condition to see if it connects with some of my other symptoms. Ty for sharing. I would love to know more!

Depends on your age and other risk factors. Vit C and D didn't change my platelets. I would keep taking aspirin and getting re-tested. My Hemo said counts can change from morning to afternoon to evening, they don't really know....but high platelets can result in clots, strokes, heart attacks .....so word to wise,,,,,I've been on HU with baby aspirin for a few years now

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.

Hi,

I have already done that. I stopped taking them. I am going back to pathology to test my blood levels soon.
Yes, everyone is different.
All the best.

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

Hi,

Good luck with that.
Please cosider Hydrea drug 2-3 tablets daily, 500mg. Possibly 3 daily if it gets worst and keep seeing pathology for blood tests to keep checking your levels.
Get your doctor to organise this, please, before it rises any further. Surprised the Doctor
has not moved in this direction.

All the best.
From Qld, Australia.