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← Return to New to Hydrea for ET
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@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.
Replies to "@1pearl Hi, I have thrombocythemia (JAK2 mutation), platelets more than 1 000 000, and also red..."
Hi @ebertolis ,
It is nice to meet you. For me with CALR 1 mutation and high platelets but no symptoms after one year of being diagnosed first in January 2025 with ET which got changed by same Hematologist/oncologist to Primary Myelofibrosis in February 2025, I still choose to take only low dose daily aspirin and no Hydrea which I have never taken. I do check my BP at home every weekday and it is normal, eat healthy food , am a good weight which has been the same for 35 years, exercise daily, and keep myself extremely busy with a positive attitude. I do believe doctors do not know much about what I might have so really do not know exactly what to do about it. Just as @janc posted, each person has a different situation and needs to do what they feel is best for themselves.
On a side note, my family is traveling to France and Italy this summer and I am really looking forward to it!
@ebertolis Hi Thx for your post.. I was diagnosed with Jac2 a couple of years ago... I am very anti-medicine however I know sometimes we have to take it.. I will be 70 years old in June I have never been sick really a day in my life.. all the sudden I have high platelets and my blood pressure was high.. I did lose 35 lb I took the Hydra for 2 months and I got off of it I did not like how I felt and it was so against my whole being.. so now I take beetroot I take one baby aspirin in the morning last time I had my platelets read they were 730.. I do feel that stress makes them worse.. I went to California for a fast and I went on juice for 26 days my platelets went down to 612.. I am going to take my chances I'm going to do what you said and go on garlic and I did start exercising by jumping on my little trampoline everyday for a half an hour.. and I am a musician and I got back into playing and I have my first gig on March 7th I'm very excited it takes my mind off of everything so I'm keeping my fingers crossed and praying because I just don't want to take that medicine thank you for your encouragement.. and I wish you and everyone else dealing with this all the best whatever path you decide to take.
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@ebertolis
Bonjour, ebertolis! Staying active is a great idea.
It is true, some people have difficulties with HU (hydrea). But thousands of us with MPNs, as well as many, many more with sickle cell disorder, are glad to take HU.
With blood cancers, for reasons nobody understands, a mutation occurs in the process that produces blood cells. No study has shown that any food or supplement can undo that mutation.
For me, HU has brought down my platelet count, and greatly relieved the crippling side headaches and fatigue of ET. It also protects my bone marrow, reducing the possibility of progressing to leukemia.
I am grateful every single day for this effective, inexpensive drug.
Each of us experiences ET (and HU) differently.
You must make the decision that's best for YOU.
Wishing you well!