Now my doctors are trying to get my on Hydroxyurea like hardcore. I’m still scared about it. I know some people have used it with lots of great results, but those side effects are no joke—AND NOT BEING ABLE TO HAVE CHILDREN?? That is some crazy shit.
Well, the main thing is that if you conceive while on Hydroxyurea, your child will have birth defects. I’m not even sure I want children in the future, but not having that option because of sickle cell is something I’m not willing to take.
So there goes another reason why I won’t take Hydroxyurea. I’m hoping that taking a mix of Fagara, Nicosan and Arginine will be the right combo for me. My mom is gonna get me the fagara root and I still have to figure out where I’m going to get Nicosan from, maybe I’ll pick it up when I go to Nigeria this summer.
Hope you are having a great weekend…I’m going to work 3 nights in a row and then have 6 days off…wish me luck!
My sister is 43 years old and has sickle cell type ‘SC’. She has been having blood transfusions for years now. The frequency of her transfusions have increased and she has to go every 3 months for a transfusion which has now caused her iron overload/liver damage. Her new doctor doesn’t want her to have anymore transfusions and is suggesting Chemo/Hydroxyurea. My sister and I share the same concerns of the Hydroxyurea causing more damage to her liver and other organs. Has anyone had this treatment to increase their hemoglobin levels and how has it worked out?
My sister is 43 years old and has sickle cell type ‘SS’. She has been having blood transfusions for years now. The frequency of her transfusions have increased and she has to go every 3 months for a transfusion which has now caused her iron overload/liver damage. Her new doctor doesn’t want her to have anymore transfusions and is suggesting Chemo/Hydroxyurea. My sister and I share the same concerns of the Hydroxyurea causing more damage to her liver and other organs. Has anyone had this treatment to increase their hemoglobin levels and how has it worked out?
I am a 50 year old sc warrior with ss hemoglobin, which is the worse of the three types of sc disease. I hsve been taking hydrea for about 12 years. Initially, the pills were too strong and made me sick to my stomach. My doctor cut my dose in half and I eventually noticed that my hemoglobin was not dropping as quickly as it use to. Hydrea basically opens up your blood vessels to allow blood to flow more freely – think of “viagra.” Incidentally, it was created as a cancer drug, it’s not chemo, but someone had the idea to use it with sc patients. It’s no cure and it does not stop the sickle cell disease processes based on your individual history, but it’s worth trying. I’ve had no side effects.
Oh sorry, I can’t speak to the fertility issue. As much as I wanted a child, I made a personal decision NOT to have any before I was even 30. Hope this post has helped.
@Patrice actually “Hydrea” shorter medical name. Is not like viagra for the blood and does not open up your veins. In increases hemoglobin F , fetal hemoglobin. This sight is about educating ourselves. Do your research.
What happens if someone stops using it?
I have sickle cell SS and I took hydroxyurea and then got pregnant while on it. As soon as I found out I was pregnant, I stopped it. My daughter did not have any birth defects. Hydroxyurea increases the fetal hemoglobin in your blood which can prevent sickle cell pain episodes. It has worked wonderfully for me. At one point, I was on too high of a dose but when I got down to a lower dose (1500 mg), that was my “sweet spot” and it has prevented me from having sickle cell episodes. The important thing is to talk to your doctor about it. There is a lot of misinformation about it. Hydroxyurea is at a much lower dose for sickle cell patients than it is for cancer patients. It also leaves the body quickly once you stop taking it, which may be why I did not have any birth defects. There needs to be more research to find out what the side effects of hydroxyurea are for sickle cell patients. A lot of the research is based on cancer patients and mice, and they were at a higher dosage.
I am taking hydrea and my wife got pregnant. She is about to give birth next month. My new hematologist just told me that I shouldn’t take the medicine as soon as my wife got pregnant. It’s too late now. Hoping our baby will be healthy.