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← Return to New to Hydrea for ET
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Hi all,
Honestly, I have not taken any Hydrea although it was prescribed for me on 1-10-25 due to high platelets on routine blood lab. I too was concerned about the side effects of Hydrea, especially since I was prescribed 500 mg twice every day! I have no symptoms and feel just fine. Yes, I am 65 now but have always been very healthy and active and still am. Exercise helps me feel better when I start to stress so I make sure to get about one hour of cardio daily and stretching and yoga at least 20 minutes. I am 5 foot 2.5 inches and weigh no more than 108 pounds, have no other diagnoses although I do have white coat syndrome. I have checked my BP daily since my December 2024 doctor visit which showed elevated BP. If I sit for 5-10 minutes before taking my BP at home, it is normal. Today it was 110/68 pulse 73 even before going in for more lab work! My platelets are still high, 988, but still down from my first two labs with my taking nothing. My white cells remain elevated some too, but red cells and hemoglobin normal although hemoglobin was low on 2-2-25 lab when my O/H changed her 1-10-25 diagnosis for me of ET to “might be transitioning to PMF”. I do have CALR mutation so know that goes with myeloid proliferative neoplasm diagnosis but I am just not sure the docs really know what I have. I still have my long term almost five years now swollen non-painful right ring finger proximal phalangeal joint which I came in to doctor in the first place to check as my chief complain which still has not been addressed. I have read that chronic non-painful inflammation can also elevate platelet and white cells and just wish my swollen finger joint concern could be addressed before such rash diagnoses of ET and PMF and need for me taking Hydrea. Has anyone else encountered such issues and how do I approach my concerns? Thanks for listening.
Replies to "Hi all, Honestly, I have not taken any Hydrea although it was prescribed for me on..."
Sorry for your recent health issues but you are seriously risking a stroke or heart attack with your platelets elevated that much. The meds aren’t bad after they get the dosage right and your body adjusts. They’ve been out since the 1960’s so that should reassure you some. It’s your life and you sound like you take good care of yourself but ex Eric’s r and good diet will NOT lower your platelets. Do some research on reputable sites. Good luck.
ET is a diagnosis thrown at patients who exhibit high consistent high platelet counts. You don’t mention if you’ve been tested for the JAK-2 gene mutation, one of several underlying causes of high platelets. I also question your stated suggested HU dosage of 500 mg TID. Seems like an excessive initial dosage. Usually, the dosage starts at 500 mg/ day, with bi-monthly labs to monitor your blood values.
I started at the above dosage regimen after being diagnosed with ET, and a corresponding lab test indicating I indeed had the JAK-2 gene mutation. After several weeks at the 500mg/day dosage , my platelet count dropped from 986 to 350. My Hemo/Onc reduced my dose to 500mg/day, 4 times a week and I’m holding at the 350 platelet count.
There are many drivers for a high a platelet count. Clearly, you need to find more evidence as to why yours is so high other than the CALR you mention.
@1pearl
Hi,
I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red cells in excess. This was diagnosed in January, ans doctor prescribed me Hydrea. But after having read the notice of this drug, I decided not to take it. I am registered in a French forum (I'm living in France) and I found a gentlemen with the same desease who had many health problems after having taken hydrea, (3 years of hospital), and after that he haven' taken any drug and he is living with high platelet number (1 200 000) since ten years, and no problem. He says you need to eat garlic and curcuma and cinnamon every day and make physical activity and all is OK.
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I don't know what white coat syndrome is.
For a while, MPN researchers were looking at all ET-CALR patients as PMF. You might want to ask your doc if he considers all CALR patients PMF. Not sure how that helps you, but might explain the waffling between ET and PMF.
But sounds like the bigger problem is that you and doc are at an impasse about which issue to address first. Would talking that thru with GP help?