Latest Update On AQEEL

Best of luck,with Aqeel and with Aleesya .

Zaini.

AL, did you discuss using hydroxyurea with your doctor???

manal

Hi Manal,

The doctor said that here in Malaysia, every kids must go through the normal iron chelator (not oral). She said that, should there be any problem whatsoever, only then they'll opt the orally active iron chelator.

However, I would still prefer the oral one, just that i dont bare to see Aqeel in any pain.

L

On hydroyurea, I understand that the test to check if it'll work, (xmn etc)  is unavailable in Singapore. (I live at the Southern most of Msia, we see Spore docs due to proximity). I doubt it's available in Malaysia. I've not consulted any hemotologist Msia, but my hemotologist in Spore was a reluctant to administer on Thal Major, she said it works on Intermedia but cautioned on long term side effects. Anyway, she is checking if we can get the test done in Thailand for me.   

AL

Hydroxurea is not an iron chelator. It is a fetal HB inducer that can increase HB in some patients and therefore eliminate the need for transfusions

You can read about it in the following links
http://www.thalassemiapatientsandfriends.com/index.php?topic=3694.0;highlight=hydroxurea

http://www.thalassemiapatientsandfriends.com/index.php?topic=3595.0;highlight=hydroxurea

http://www.thalassemiapatientsandfriends.com/index.php?topic=3352.0;highlight=hydroxurea


Syaida Lee
You are right about this test but now doctors tend to try this medication in general because sometimes there are other factors in the ody that makes it work.

Also there was a study done to measure the safety of the drug on long term basis and found that it is safe when used in low doses (up to 20mg/kg)

Also find below an important study about the role of hydroxy in eliminating transfusions in thal major patients done on 49 patients. Please show it to the doctors, hope they get convienced.
 
http://www.ams.ac.ir/AIM/09123/0013.pdf

Thanks Manal 

I will for sure ask the doctor about this on next visit. Next appointment scheduled on 29.10.2010

Thanks Again

L

Best of luck,with Aqeel and with Aleesya .

Zaini.

  Just got the good news, Aleesya follows her dad, She's Hbe Trait. Daddy's GIRL for sure heheheh . 

Thank You to all for the prayers and wishes 

Love u all 

 

Oh that must be a relief  congrats 

Zaini.

Resveratrol is a natural supplement made from red grapes. It is also a hemoglobin inducer that can be used with wheatgrass. Hydroxyurea is a drug that is also a hemoglobin inducer and it can be taken with the other supplements. However, it is a drug, and must be taken under a doctor's supervision. I am certain the spots were a reaction to the unfiltered blood. Often, an antihistamine like benadryl, is taken along with the transfusion to minimize this type of reaction.

---

as said above can even a thal major child on regular transfusion regimen also go for Resveratrol & Hydroxyurea  as these are the hb inducers

Pleasance,

Any patient can take resveratrol. It is a natural supplement and readily found through online supplement companies. Hydroxyurea must be prescribed and taken under a doctor's supervision. However, it is difficult to find doctors familiar enough with the research to approve the use of hydroxyurea on transfusing patients. I would suggest that you talk to the doctor about hydroxyurea. I think in this particular case, it is definitely worth an attempt to see if the transfusion frequency can be reduced.

hi al,

hv you started the iron cheator on aqeel?

Does we hve oral iron cheltor here in m'sia? what say the doc on this recently?

joyce

hv you started the iron cheator on aqeel?

Does we hve oral iron cheltor here in m'sia? what say the doc on this recently?

joyce

Hi Joyce,

Aqeel has not started with any iron chelator yet,, it seems that his iron level is 4++, previously 6++ (did'nt know that it is possible to fluctuate). About the oral chelator here in Malaysia, i did ask the doctor, they said that YES we do have it but only on certain cases will they prescribed it.

Later

Hi everyone, 

Wish us luck, this coming Friday we're gonna bring Aleesya to the hospital during Aqeels monthly check up. The doctor told us to bring her along in order to see if she's a match for Aqeel.

 

LAter

L

 

Best of lick AL, keep updating

manal