Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on April 01, 2008, 01:25:10 PM
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doctors did some test and the xmnr polymer test showed results of - and + both, so they said we can try hydroxurea and see results.. well some side effect they told me that short tearm- complexsion may get dark.. for long term ... they are giving to some of patients for 7-9 years and to them no side effects seen yet otherwise if go through manuals then there are some serious side effects which might occur..
y dosnt anything go smoothly ...
micky
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doctors did some test and the xmnr polymer test showed results of - and + both, so they said we can try hydroxurea and see results.. well some side effect they told me that short tearm- complexsion may get dark.. for long term ... they are giving to some of patients for 7-9 years and to them no side effects seen yet otherwise if go through manuals then there are some serious side effects which might occur..
y dosnt anything go smoothly ...
micky
1st blood tranfusion was done on 15-3 at hb level 5.2 ,, today we did cbc count again 1-4 about(17 days). hb is 9.0 and platelets are double 650 more than normal , creatnine is less 0.4!!!! rest everything perfect.
regs
micky
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Micky,
Your son is really cute,Give your sweet little boy so many kisses from me.:)
ZAINI.
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Aww.... He's soooo cute :wub
Please take good care of him. Looking at the glow in his eyes, he would do so well if you keep his Hb. high at all times.
Best wishes.
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What a beautiful child Mickey!
He looks well, you've taken good care of him.
Sharmin
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thanks every1.
:wink
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my son had little fever and hb went down to 7.8 now, but now doctor said that we cant do the blood transfuion and he is on hydrea... and have to wait until goes below 7 or is stable as hydrea will show effect only hb is below 8.
lets see i hope good results now with hydrea.
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:goodluck Micky,
with hydrea.
ZAINI.
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Best of luck Mickey!
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its almost time to get 1st CBC counts to check if platlets and thc is fine as these are things that get effect with hydera as side effects. hope to get good results.
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1ST CBC AFTER HYDREA
HB-8.3, TLC-13.4, PLATLETS-407, rest all normal
test were ok for hb increased from 7.8 to 8.3, doctor said its 14 days only cant decide right now will see next cbc again. platlets before 605 had decreased to 407, though now are normal as before it was excess.
so i had not much knowledge now but i hope something good in future.
micky
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The early increase in Hb is a good sign. Please also use any other fetal hemoglobin inducers such as wheatgrass along with the hydroxyurea. They will complement each other and work to increase the Hb. An Hb of 8 is quite a relief, Micky. One time supposed increases in platelets are no concern as it is one of the most misread of the blood count tests in thalassemics because the misshapen red cells are often counted as platelets.
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Things are looking good for our little cutie for now - we wish you continued success and improvement Mickey:)
Sharmin
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andy getting some reply from you specially in our side really boost my confidence atleast.
thanks
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Micky,
I continue to believe that your son has a good chance to be a non-transfusion dependent intermedia. There may be occasional transfusions but his ability to maintain an Hb of over 7 seems to be well established. His overall health and bone development will also be factors to be weighed but he definitely seems a good candidate for HbF induction. I still feel Dr Mathur's treatment had some minor positive effect and one of the main values of that is showing that your son's HbF can be raised. After learning more about the supplement called resveratrol, I would recommend it if you can find it there. It is an extract of red grapes and has been shown to raise Hb levels. These different Hb inducers work together and this and wheatgrass can both be safely taken with other meds.
What do you observe about the way he looks, his energy level and his overall health since starting on hydroxy?
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Hi Micky
Great going. Looks like he is benifiting from hydrea. I felt it took some time for hydrea to show benefits atleast it took Ahmed around 3 months. So it just cannot be hydroxyurea, probably it is a combined effect of all other things you are giving him wheatgrass, resveratrol, IP-6 etc...By the way are you continuing with Rodex.
Take care
maha
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hi everyone.
maha yes we are still giving rodex as its just 3 drops after 4 days and since 1.5 year its been ok no side effect so im giving that still,
andy, well my son after a week from hydrea seem more energetic and now he has little extra plumpyness , littel chubby as what normal kids look ,
though he is vomiting now onces a day or some times not as might be because of hydrea.. as i read on internet but otherwise he is more happy then compared to before or like the 1st week when we did blood transfusion my son was like himself playing around otherwise before he just is in our hand and lazzy.
will do then next cbc in 1st week. again.
regs
micky
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hey.
hb count today- 7.0. TLC- SAME. PLATLETS - LITTLE DICREASE, but hb is fallen then last time giving hydera regularly, well now again ups and down, nothing is steady for long time for me. its been 1 month on hydera now.
well now like ahmed i hope that hydrea might show good effect in time.
hope for good
micky
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today hb count is 6.8. more down. doctor said we should consider 1 blood transfuion next week if it goes down. my wife want to go for bt now as kabir is geting thiner but he is active same as before. we are little confuse.
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Hi Micky,
It's really a tough decision to make, but the the way i think is that hb of 6.8 is very low for a growing child,i know thal intermedias do live with hb that low,but who knows how they feel?
I can only wish you and your cute little son best of luck.
ZAINI.
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Hi Micky
I feel its better to wait for a week as the drop in hb is not much. It could be just due to the change in hydration level. Also temperatures are soaring in Delhi, that too can account for a drop in hb. You have repeated the hb in just five days, was Kabir sick or showing signs of a low hb? Wishing Kabir the best of health
Maha
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hi. maha, zaini
i m wating for 5 more days to see. but your right wheather here had change to very much hot now its about 40.c here so it might be reason to drop in hb aswell. but like zaini said its good if we keep hb high so doctor does stoped us but in my heart i feel to go to blood transufson.. welll finaaly we are waiting till monday to check hb.. we check hb by prick from fingure so that dosnt hurt kabir .. much.
regs
micky
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Micky it is acceptable to give the hydroxyurea up to 9 months to be able to evaluate it and to know whether you will continue on it or not. My short expierence of 5 months is that the HB started to rise starting the fourth month only, but an accumulative increase in MCV started from the first month
hope this might help
manal
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thanx manal for information . u gave hope for more time to us. please confirm me that now i m going for transfusion on monday.so please confirm me for HYDREA need to continue after bt? as after bt hb will be rise to 11 i think now is 6.8. we will give me 200ml blood.
so what to do. hydrea need to stop until hb comes down to 8? or not
regs
micky
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Hi Micky
From what I understand hydrea is usually continued even after blood transfusion. Some majors on transfusion take hydrea as it increases the time between two transfusions.
take care
maha
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For those interested in the effects of hydroxyurea on Hb over a longer period, please check the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1699.msg14097#msg14097
Olivia has been fairly stable for quite some time now. Give hydroxyurea a fair chance to work. It does show very positive effects on many patients, especially intermedias.
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Micky i am not quiet expierenced about blood transfusions with hyrea, but what maha and andy said answered your question. Wish you all the luck :hugfriend
manal
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Is it NECESSARY to get your hb as low as 8 before starting hydrea? You can't just start it anyway? with transfusions?
ZAINI.
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12-5-8 hb report- 7.0 it was stable.. but unfortunately. my son on suday while playing fell of and he had some bleeding from his mouth i was really scared and thought that hb will surely go down and its not good then we next day wnet for BT. as they did the test before bt for hb. as a routine and after 4 hrs report comes and was 7.0. we was really confused what we did is good or not (BT). but as bt is under other thal. specialist and she is against hydrea now as we didnt told her before for hydera. now she told us to STOP hydrea as my son is 2 year only and we will start hydrea later.. now again what to do should be stop it or not.. confusee .
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Hi Micky
Your post is very confusing. If your thal speciallist didn`t reccomend hydroxyurea then who did? Do not use these drugs unless advised by a doc who has good experience with thalassemia.
take care
Maha
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Studies of hydroxyurea have used subjects as young as 1.5 years, but I don't know what the age limit is in India. This study was conducted in India. Talk to the doctor that prescribed hydroxyurea and inform him or her about the transfusion doctor's concerns.
http://openmed.nic.in/2491/01/Sachdeva_381.pdf
We administered orally hydroxyurea in 70 patients of Beta-thalassemia with dose of 15-20 mg/kg/day.
They have been followed up for a period of 4 months - 3 years. The age of the patients ranged from 1.5-25 years...Conclusion: Hydroxyurea remains a good option for patients who have presented with anemia at more than 2
years of age. Long term side effects need to be evaluated.
The
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How is your adorable son doing Mickey? I hope things are well.
Take care,
Sharmin