Month 9
Nia is 13
Month 9
Nia is 13
They know it is not a cure, but she is able to live a mostly normal life.
Hydroxyurea can stop many sickle cell disease problems, but it is not a cure.
About Hydroxyurea:
- It is the oldest and most common medicine for sickle cell disease.
- When you begin Hydroxyurea, your doctor figures out the safe amount for you.
- In the beginning, the amount is slowly increased to find the maximum you can tolerate. This is the amount you will take for the rest of your life (with some changes as your weight increases).
Nia takes Hydroxyurea, but there are other medications for sickle cell disease.
Learn more about medications and talk to your doctor about the options.
Each medicine works differently.
Hydroxyurea
Hydroxyurea gets your body to make fetal hemoglobin again. These are healthy red blood cells that you made before you were born (inside the womb). It also stops sickle cells from being so hard and sticky.
- It is in pill or liquid form.
- You take it once a day.
L-Glutamine
L-Glutamine stops red blood cells from turning into sickle cells. It also stops sickle cells from being so hard and sticky.
- It is a powder that is mixed with a liquid or semi-solid food.
- You take it twice a day.
Other medicines:
- Voxelotor (Oxbryta) was voluntarily withdrawn from the drug company on 9/26/2024. If you previously took this medication and have questions about this, talk to you hematologist.
- Crizanlizumab (Adakveo) did not show significant improvements in reduction of pain events over placebo in the preliminary results from a Phase III trial (the STAND Trial). Many hematologists would not recommend it for a patient like the one in our story on this website.