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Essential Thrombocytosis: What amount of hydroxy do you take?
Blood Cancers & Disorders | Last Active: Apr 14 10:05pm | Replies (77)Comment receiving replies
Hi
My haematologist has also increased my hydroxyurea dosage. What I’m wondering is whether or not this affects anybody’s stomach. I can’t tell whether it’s just some of the worry or this whole blood disease that causes my stomach to be upset a lot of the time or whether the increased HU is just a matter of getting used to the increased dosage. Would love to hear from anyone about side effects that they’re experiencing in relation to this medication. I am also extremely fatigued these days and I guess that’s just the disorder .
Cheers
Diane
Replies to "Hi My haematologist has also increased my hydroxyurea dosage. What I’m wondering is whether or not..."
Hello. I have the same problems with my stomach too. Nearly everyday. My haematologist suggested small meals at smaller intervals. I have no gallbladder which makes things worse.
Some days I am so tired until the mid afternoon when I buck up a bit. I have it 13 years now.
I take 500 capsule every evening plus 1.8. of liquid in a syringe to top up to 608. That keeps my platelets level under 400 around 360.
I am a terrible worrier. My family help to keep me going. It could be worry which doesn't help digestion.
I play piano and teach on line. I don't go out to mix because of Covid which scares me. It's a shame that Covid happened because although I have all the jabs here in England no one know whether us people are covered at all! I put up with my tummy pains they are horrible and happen most days after lunch. I hope this helps to know I feel the same as you do. I am nearly 79.
I was diagnosed with ET in November, 2023 and my hematologist started me on 500 mg of HU twice a day, 7 days a week. As of my last bloodtest two weeks ago, my platelet count has dropped from a high of 692 to 202. Two weeks prior to that my dosage was changed to 500 mg 2x a day 5 days a week. I test again this coming Tuesday and have a follow-up appointment on Thursday and am hoping for further reductions in platelets and dosage! I have been extremely fortunate not to have had any discernable side effects from the HU. As an aside, I was simultaneously diagnosed with microscopic colitis (this is what started my diagnostic journey) and pancreatic enzyme insufficiency ( my pancreas makes almost no digestive enzymes). So I have had a lot going on but with medication and diet modifications I am now essentially symptom free.
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Being fatigued is the hydroxy it is a chemo medication which helps your bone marrow to not make so many platelets. You never said what ur platelet count was that ur Dr. increased the med. from what to what, also did he tell you if u have the jak2 gene? I have had this condition since 2005. I was on hydroxy until last year. My platelets are now 478 and why I don’t know but my dr. Is giving me a break no hydroxy for a year. Also, I have the jak2.
Feel better
Debbie v