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hydroxy urea in transfused patients

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zahra:
Hi
I think my son will be started on hydroxy urea after his next appointment on Wednesday. Any guidance on what to expect and what to look out for would be appreciated. Manal? Priya? or anyone else with experience.
From what I understood was that transfusions would have to be stopped so that there would be bone marrow activity earlier but now that they are using it in major also is that still applicable?
Wish us luck
Zahra

Manal:
Zahra,

When you are under hydroxyurea, you should be monitering three things
1- The counts of white blood cells and hydroxurea should be stopped if they become below 3500
2- Kidney functions
3- Liver functions

These tests should be made monthly until you are sure that the body is tolerating the hydroxy then you start doing these tests every 3 months and then every 6 months

The good thing about hydroxy is that if for any reason there are side effects, they are completly reversed when the drug is stiooed

For some patients, they may feel dizzy, or had a stomach ache, i advise that the medicine is taken just before bed time

Hydroxy can be taken with or without food and even when you are on antibiotics

It is very safe taking the dose from 10mg per kg until 20mg per kg, but in some sickle cell cases it is taken until 35mg per kilo

The exact dose should be fine tuned according to each patient, i mean that there is no exact dose some  react positivly at lower doses and other patints at higher ones so we have to make a trail and error

Also you should know that some patients react positivly from the first month others don't and may take more time, that is why it is agreed that you can take it up to one year until you can decide wheather it is useful or not

Hydroxy helps to reduce:
1-  Size of the spleen and therefore the body is able to redirect its energy to growth
2-  Decrease the retix count and therefore reduce risk of bone deformity
3- The activity of the child increase and the child ''somehow'' eats better
4- Reduces ferritin levels

Hydroxy is best taken with L-carnitine (5 days per week) and magnesium

When taken with transfusions, in some patients, it can increase gap between transfuions and in some cases can eliminate transfuions

Wish you all the luck and please keep us updated

manal

zahra:
Dear Manal,
Aoa. Thank you sooooooooooo much for writing such a comprehensive answer. I hope it works and that we see results soon. I wish to ask how much L-carnitine would be advised for a 13 kg two year old? Also is the magnesium in osteocare sufficient or is extra required? I hope he doesnt get more stomachache. We are still hoping the one caused by exjade will go away with time.
Thank you for your wishes. I will keep you informed inshallah.
Zahra

Zaini:
Zahra,

Best of luck with Hydrea :goodluck .

Zaini.

Sharmin:
Good luck Zahra.  Please keep us posted. 

Sharmin

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