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hydroxy urea in transfused patients

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Zaini:
Hi Syaida,

Welcome on the forum,we have a member Cherrianne who is a thal major and she uses hydroxyurea,it didn't make her transfusions stop totally but it helped her to prolong intervals between her transfusions,i believe she goes for transfusion every six weeks and she is a grown woman .

Just though you would like to know :)

Zaini.

Syaida Lee:
Zaini,
Thanks for your note. Where is Cherrianne from? My doctor just replied to me after reading some of the articles that I "linked" her on Hydroxyurea and she said it depends on the mutation. It may work on middle eastern mutation of beta-globin gene but in her experience the south east asian patients that she has doesn't respond to it. However, we are exploring it, I understand my son, adel's inherits a copy from his father which is usually by Mediteranean descent and one from me, which is from South East Asian descent. She is also worried about the long term side effects (after 10 years) which is unknown, apparently cancer causing?  What do you say?

Manal:
 Hi Syaida Lee


Our member is from Newzeland.

As for the usage of hydroxy according to mutation. This is correct and there is a test called Xmn polymorphism is made. If the result is positive,it means you will benefit and if it is negative this means you won't, BUT practically doctors found that some times patients with the negative result react very good to hydroxurea and their hb rises to the extent that they eliminate transfusion and their explanation to this is that sometimes there are other unknown factors that help the body to react positively and this resulted in that many doctors try hydroxurea any way  because each patient is completely a different case.
 

As for the safty of the drug, there is a study done by an Iranian group that proved the drug safty on a long term usage on low doses which is between 10mg per kg until 20mg per kg.

And in my opinion other drugs will definetly be available for patients before those 10 years that would do the same jo as hydroxy (hopefully)

Please make sure from the doctor that Adel's issues concerning his lungs does not contradict with the usage of hydroxy

Take care
manal

zahra:
Hi everyone,
Yesterday on the 8th day of hydroxy urea 20mg/kg my son got a slight fever. This morning he was ok but now he seems feverish again. He is sleeping so I haven't seen how much exactly. The doctor had said if W.B.C. go low there will be fever and infection but not what to do if there is a fever and what kind of fever needs action. Should I wait and see ................or go to the ER?????
Advice wanted.
Zahra
PS: Others in the family have a cold and he did complain of throat pain yesterday.

Manal:
Zahra,

Most probably he is having a cold or an infection specially that others in the family complain too. Take him to the doctor and check especially if there are other symptoms like runny nose,cough,...


But i must also note that i know a family whose son's body had a reacton with hyrea that was continous high fever (almost reached 41 c and throat infection and after several ons and offs and lowering the dose, it was discovered that his body does not tolerate hydrea and it was stopped but this is very very rare, even the doctor said that he is the only case during her whole medical life)


But in the case of your son, having other members in the family ill makes more sense that this does not have to do with hydrea. Keep monitering and give him th suitable medication according to his infection and keep us informed please

manal

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