Hydroxyurea... The Basics
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- čas přidán 28. 06. 2014
- Hydroxurea is the only medication currently available in the US for any type of treatment of Sickle Cell Disease. Today's talk gives an overview of how it works, who can take it and what to expect.
Great info, thank you very much
Yes iron chelators also raise HIF which raises Hb, ironically
hello my name is greilin I've been taking hydroxyurea since I was about 7 years of age i am 22 now. when I was a child trips to the emergency room for very bad but with time things got much better, the crisis where once every year or once every two years. but I stopped taking hydroxyurea when I was 18 and I got pregnant twice so I have 2 kids. during and after my pregnancy the crisis got bad very very bad is so hard to have this life because you don't know if one day you're going to be fine or in so much pain.. I'm trying my best to take care off myself for my family and thanks to God my kids don't have sickle cell..
ssi
Greilin Diaz i read your story and it's so sad, am actual a father of a pictured girl 9 on my profile and also have another girl 19 both suffering from sickle cell desease. they are about to start hydroxyurea and wanted to learn more about the long term effects and control.
Pls how can I get access to this drug hydroxyurea.I have sickle cell disease. Pls am in Nigeria
I am wondering if my children should start HU. They have a very different case than most sicklers. My children have SS, but my youngest has never had a crisis and my son has one a year. They still have high fetal hemoglobin at F17 and F24 so much higher than the average child their age (7 yrs old and 4 yrs old). What are your thoughts?
My mom takes Hydroxyurea. and it gives her lots of side effect does any one know how much folic acid or anything else to reduce the symptoms
I've never taken Hydroxyurea but I have the milder sickle beta thalassemia with a 'relatively' decent hemoglobin level (9.9g/dl)
But I'm wondering if it's possible to get any more of a hemoglobin boost or other benefits from taking Hydroxyurea?
What is Hydroxyurea's track record with sickle beta+ thalassemia, if any?
Thanks
Many doctors only prescribe hydroxyurea for SS or SC patients and not to either sickle beta + or 0 because of the mean cell volume limitations for people with the thalassemia component. (One of the ways it works is by "plumping up" our red blood cells, which doesn't often occur with hydrea in the sickle beta thalassemias). This medicine works in a multitude of ways and is still being studied, but it has shown a raise in fetal hemoglobin and overall hemoglobin (you are already pretty high) and mean cell volume as well as a decrease in reticulocyte counts (production of new baby red blood cells) and possibly stickiness of red blood cells. A quick lit. review in Pub Med showed exclusion of sickle beta + from many of the studies. You could talk with your doctor about trying it if you think it might help. We have heard that the new standard for newly diagnosed infants will be prophylactic hydrea before they become symptomatic, but there is no national protocol or expectation at this time. It is all doctor discretion...talk with your hematologist if you want to learn more.
HOPEforSCD org
Thanks for your insight.
You're Welcome :)
i have two children.
both are with SCD.
What can i do for their better health ??
is there any treatment ??
Unfortunately there is no specific treatment beyond Hydroxurea at this time. Doctors do have children on penicillin until the age of 5 to cut down on life threatening blood infections. Staying hydrated (huge problem in SCD) and following up ongoing with your hematologist (blood doctor) is the first step. You can also look into natural alternatives through Sickle Cell Natural Wellness Group page on Facebook. It discusses food based ways of controlling inflammation, increasing hemoglobin, etc. Check it out!
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