Sikcell: People living with Sickle Cell

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people with sickle cell on hydroxyurea what you think about it good or bad

i,m 17 and i had a acute chest at 4 and at 15 my pain crisis are 3 a year i would like to have feedback on useing hydroxyurea pros and con facts. Can you please help me to understand this more. I know what the doctor say. BUT WE KNOW HOW IT AFFECT US ALSO.

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Permalink Reply by Diana Arevalo on January 31, 2012 at 5:22pm

Hello,

I have been on hdroxyurea for the past 5 to 6 years now. Before I started taking hydroxy I used to go to the hospital due to a crisis every 3-4 months at a time meaning that I established a record of being admitted at least 7 times in one year. I was desperate and needed something to reduce the amount of crisis i was having. When I started taking hydroxyurea I went 3 whole years without get a single crisis!! It was a miracle. I finally knew what being normal and healthy was all about. On the fourth year I had one crisis which wasn't as strong as I thought it would be. Since then each year I get sick once or twice. I feel like the medicine isn't performing as amazing as it did at the beginning but staying crisis free for 11 out of 12 months is good to me anyway!! I am sure along the road there might be some side effects or the hydroxyurea may stop performing as well but for now I am happy with the results. Just make sure that the doctor who is checking up on you doesn't take advantage and ask you to get checked out every single month, those doctors only want your money. I go to check up every 6 months or sometimes just once a year. :)

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Permalink Reply by cquinc on February 8, 2012 at 2:13pm

My friend has SCD. I want to help her. She has never been offered Hydroxyurea by any of her doctors and I want her to ask her doctor about it. One question she has is "how big are the pills". She has a hard time with taking pills and the bigger ones make her choke. She is really concerned about it so I would like to get an idea of how big the pills are and how often are they generally taken. I will have more questions later, but this might be helpful to get the discussion started with her doctor.

I hope this fits with the current discussion on this message board ok...

Quin

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Permalink Reply by Ade Dotun on February 8, 2012 at 2:17pm

hey Quin, glad to hear that you are helping a friend out with this. you can get an ideo of how big the pills are in this picture i posted here, along with the dosage, it is usually taken once a day: http://sikcell.com/photo/my-daily-pillz-wat-pills-do?context=user

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Permalink Reply by Diana Arevalo on February 10, 2012 at 9:30pm

its not that big, tell her not to be afraid of it for its size, there are methods described on the instructionson how to take them without having to take the pill.She should look into that because... Its worth it.

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Permalink Reply by cquinc on February 13, 2012 at 2:43pm

Diana,

I will tell her today. I'm really glad to hear it is not too big and that there are ways to take the medicine without taking the pill. It is surprising the things that can get in the way of receiving the help that is needed. I think the name of the pill is terrible. Hard to remember and hard to say. It needs a friendly name that is not so scarry.

She is over 40 yrs old and I worry about her so much...

Quin

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Permalink Reply by Ade Dotun on February 13, 2012 at 4:27pm

its usually referred to as hydrea for short

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Permalink Reply by Nora on February 13, 2012 at 11:57pm

Hi Jerome,
My fiancé has been taking hydrea for several years and it has helped him greatly. As far as he knows, he has had no negative side effects. For a small period it was making his liver counts off but they just had to correct his dosage and everything was normal again. Obviously I'm not a doctor, but I would recommend hydrea just because I've heard nothing but good things. If you already have a pretty good fetal hemoglobin number as it is then it should work really well for you, even if not it still should help to keep you having less crises and hospitalizations. If you started taking it already, we hope it's working for you!