hidroxiurea

hello my name is Lola. I have a daughter five years old. she is a delta-beta talasemia. Her hg is 7.5-8. Tomorrow starts taking hidroxiurea. Please could give me some advice?

Hi...
My daughter is 2.7yrs old and is on hydroxyurea too. My advise is that you MUST keep her very very well hydrated. Meaning give her lots of liquids. Also don't give her too much fatty diet. Give her lots of fresh fruits. Hope this helps and your daughter settles down on hydroxyurea. Just remember you are not alone. all of us are in this together. I hope her hb increases.

Regards
Asma

Hello my name is Lola. I am mother of a child of six years of age recently diagnosed of delta-beta-thalassemia. Her hemoglobin level ranges between 7.5 8. Her height and weight are normal. She is an active and healthy girl. Good appetite. Her doctor has told me that we are going to try with hydroxyurea  because her hemoglobin level is 100% and could be a good candidate to take the medication.  weight is 21 kilograms, although doctor believes should begin with a dose of 200mg, which i by what I read in this forum is a low dose, but i guess that will be to go progressively increased. All the days taking folic acid, vitamin E natural, multivitamin  without iron, L-carnitine and now we will start with supershot of wheatgrass and with magnesium and calcium( osteocare).
I wanted to ask you to please give me their advice on how to take hydroxyurea to avoid side effects and your experience in the use of the medication.
Many thanks and greetings to all. I am delighted to be part of this forum. It is great. Thanks Andy for his wise counsel.

thank you very much Asma.

I wanted to ask if someone can tell me if it is necessary once you start to take hydroxyurea  do a blood test  every week to see how they are the cells in the blood or  each how long the controls do? Thank you very much.

Hi Lola,

First, pay close attention to what Asma says about staying hydrated and avoiding high fat foods. This is extremely important and the best thing you can do to minimize side effects.

The drug should be started out at no more than 10 mg/kg daily. For example, if a child weighs 20 kg, start with 200 mg daily. The goal is to end up with a dose of 15-20 mg daily, but you can take some time to get there, to allow the child's body to adapt to the drug.

This site has complete monitoring details. Don't be alarmed if every single thing is not followed. What is most important is watching the white blood cell level and the kidney and liver values.
http://scinfo.org/care-paths-and-protocols-children-adolescents/hydroxyurea-protocol

Monitoring
1. CBC, reticulocyte count: baseline, then every 2 weeks until maximum dose tolerated without toxicity for 8-12 weeks; then every 4 weeks.
2. History and physical examination: baseline, then every 4 weeks until maximum dose tolerated for 8-12 weeks, then every 8 weeks. Be alert to the possibility of recurrent or new splenomegaly and risk of splenic sequestration.
3. Fractionated bilirubin, ALT, and creatinine: baseline, then every 12-24 weeks.
4. Quantitation of hemoglobin F: baseline, every 3 months x 2, then every 6 months.
5. Pregnancy test (if menstruating): baseline, then prn. (Stop HU immediately for positive result and offer teratogen risk counseling. Information is available from the Organization of Teratogen Information Services at 888-285-3410 or www.otispregnancy.org).
Toxicity: Toxicity from hydroxyurea is generally defined as any of the following:
ANC <2000 x 106/L
platelet count <80,000 x 106/L
absolute reticulocyte count <80,000 x 106/L if hemoglobin <9.0 gm/dl
hemoglobin <5 gm/dl or >20% below baseline
serum creatinine >1.0 mg/dl or 50% above baseline
100% increase in ALT
If toxicity occurs, treatment will be stopped for at least 1 week and until toxicity resolves. HU will then be resumed at the same dose or a dose decreased by 2.5-5 mg/kg/d. If toxicity does not recur after 12 wks on the lower dose, the dose may then be increased by 2.5-5 mg/kg/d. If toxicity recurs on the higher dose, then HU will be stopped again until toxicity resolves, and hydroxyurea can then be resumed at the lower dose.

Hello Andy. Thank you for your response. The results of the analytical that we have received today indicate that my daughter has a level of fetal hemoglobin 96 %; however her doctor thinks that she is not to benefit the hydroxyurea because he says that it produces only fetal hemoglobin. I need your opinion on this topic and if you could put some link would be grateful. I by what I read in this forum the higher the level of fetal hemoglobin more likely to succeed with hydroxyurea . Please please correct me. As I told you my daughter is double heterozygous, delta-beta of his father and me, who i have mutation in codon 39. You think , think my daughter is good candidate for hydroxyurea?

Lola,

Your doctor is misunderstanding, as most do when advising. Math is not necessarily their strong suit. Yes, your daughter's HbF percentage shows that she produces almost no other hemoglobin. In no way should this be taken as meaning the total fetal hemoglobin produced cannot rise. If Hydroxyurea works for the child her total Hb will rise even though the HbF percentage may not change. The goal is to stimulate even more HbF production. This will still show as over 95% of the total, but the total will be higher. This is what happens when people confuse percentages with actual numbers.

Andy my dr has me on hydroxyurea and magnesium but  I do not like the magnesium what are the benefits of taking it in conjunction with hydroxyurea or the cons of not taking it with hydroxyurea? Thanks


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You should be taking magnesium whether or not you're using hydroxyurea, as it is essential for the health of red blood cells. When used with hydroxyurea, it increases the effects of the drug, as does L-carntine and wheatgrass. Magnesium is extremely important for proper heart function and also for muscle function. If your current brand disagrees with you, try another brand.

Thanks Andy.


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