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.

Jump to this post