Hydrea --update after 2 years--

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Offline Manal

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Hydrea --update after 2 years--
« on: May 09, 2011, 12:04:35 AM »
Hello dear friends
I am reminding you that my son is on hydroxyurea since February 2009. He is doing fine though it is not reflected so much on the total hb, but I am sure that we are benefiting from other things that the drug offers. Generally the maximum his hb was 7.8 and the minimum was 6.8. His own hb without the drug ranges from 6 to 6.5

http://www.thalassemiapatientsandfriends.com/index.php/topic,3352.0.htmll

Here is an update
Last February, I did the annual check ups. Echo, abdominal and pelvic ultrasound and they are normal. Kidney and liver function are normal too, as for the CBC it was one of the good one as the hb was 7.8

The new thing that I introduced was that I gave him the resveratrol that was studied by Professor Gambari of Italy ( called transmax resveratrol from biotivia which is really so expensive compared to the other brands and I wish to know why !!!!!!!!)

On February 15th the results were as follows

Hb…………………...7.8
Haematocrit…….  23.8%
Red cell count…….3.53
MCV…………………67.3
Leucocytic count…5,500
Platlets ……………279,000
Retic count………..3.2%
Bilirubin……………1.9


This encourged the hematologist and I to test the resveratrol (that was studied by the professor) alone to see if it will maintain this hb or not. So I took away the hydroxurea for 20 days and the results were as follows on 5th of March:

Hb…………………...6.95
Haematocrit…….  26.6%
Red cell count…….4.47
MCV…………………59.5
Leucocytic count…7,700
Platlets ……………250,000
Retic count………..6.5%
Bilirubin……………3


So we decided to resume again with the hydroxurea with the same dose (17mg/kg) in addition with the resveratrol and other supplements.

On April 28th, his CBC was a s follows:

Hb…………………...6.95
Haematocrit…….  19.1%
Red cell count…….3.17
MCV…………………60.2
Leucocytic count…5,800
Platlets ……………80,000
Retic count………..5.5%
Bilirubin……………2.4


As you can see the platlets decreased to a big extent and the hematologist wasnted to stop the hydrea because the platlets are very low.
The reason for this was either the hydrea is  severly suppressing the bone marrow that the production of platles was affected or the ither reason is the spleen is ‘’eating’’ the platlets (not differniating it with the RBC). His spleen was 7cm enlarged

I was afraid to completely stop the hydrea lest the spleen will increase more and more so I agreed with the hema to reduce the dose to 11mg/kg and do another CBC after 15 days to see if the platlets will be corrected or not. The 15 days will end on May 16th.
So please pray for me cause I don’t know the options if they are not corrected

I have been monitering the fetal HB through the years and here is what I found

Diagnoised in 2006........HB F 11%

In January 2007 and for 80 days,Started resveratrol alone.......HB F 13.8%

May 2007 until November 2007, started hydrea on a dose that ranged from 15mg/kg to 20mg/kg.....HB F 26%

February 2009 till today, resumed hyhrea again on a dose that ranged from 15mg/kg to 18mg/kg....HB F 27%

In the beginning of 2011, I added to the hydrea the transmax resveratrol for 120 days........ HB F 30%

April 28th, 2011, same as above..........................HB F 25%
 

The last result of HB F being decreased makes me think that the hydrea is strongly suppressing the bone marrow and that caused the platlets to decrease.
What do you think ??? Happy to receive your feedback and hope my expierence will be of any benefit to any of you

manal

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Offline Manal

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Re: Hydrea --update after 2 years--
« Reply #1 on: May 09, 2011, 12:39:14 AM »
Another good news, finally I was able to correct the deficiency of zinc after two whole years ...thanks God and thanks Andy so much for directing me to use the ionic zinc, it is easy to control the dose and there are other important minerals that is added to it too.

My son zinc level now is 116 ( 70-120). Two years he was 30

Now I am planing to maintain the dose only and will be testing after six months too

Manal

Re: Hydrea --update after 2 years--
« Reply #2 on: May 12, 2011, 06:43:18 PM »
best wishes manal,
you're such a great mum!
 :hugfriend

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Offline Sharmin

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Re: Hydrea --update after 2 years--
« Reply #3 on: May 12, 2011, 07:03:54 PM »
Manal,

This is great.  You are doing an incredible job with Ahmad.  I wish him better and better health each day.  All my love,

Sharmin
Sharmin

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Offline Manal

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Re: Hydrea --update after 2 years--
« Reply #4 on: May 13, 2011, 01:28:13 AM »
Love & prayers, Sharmin

Thank you so much for your kind words and wishes. They mean a lot. :hugfriend
Manal


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Offline Manal

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Re: Hydrea --update after 2 years--
« Reply #5 on: May 26, 2011, 02:17:20 AM »
I did another CBC and thanks God, platelets increased to 170,000
The doctor increased the dose of hydrea again to 15 mg/kg and I am going to do another CBC after two weeks. Hope that the platelets will remain at their normal range
Manal

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Offline laiba mukhtar

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Re: Hydrea --update after 2 years--
« Reply #6 on: July 18, 2011, 12:47:52 PM »
@ manal
best wishes for u and your son.. :smiley
and i want to ask is there any specific test to measure the zinc in body...and what's the name of that??
thanks
laiba

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Offline Manal

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Re: Hydrea --update after 2 years--
« Reply #7 on: July 19, 2011, 03:35:22 PM »
Thank you Laiba for your wishes  :biggrin

The name of the test is ""zinc in blood""
Take care
Manal

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Offline laiba mukhtar

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Re: Hydrea --update after 2 years--
« Reply #8 on: September 02, 2011, 11:15:04 AM »
@manal
 :thankyou2
laiba mukhtar

Re: Hydrea --update after 2 years--
« Reply #9 on: September 27, 2011, 04:12:58 PM »
Hi Manal!

Congratulation for you and your son!

And i would like to ask you how is your son take a hydro oxy urea? He takes hydroxyurea with a daily ???

My son has beta Thal intermedia also, i am looking the way to increase his Hb, when i read your update, i am so happy and i think that i must be learn from you and need your advise too much!

High appreciate for your advice,
Thanks
Kim

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Offline Dori

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Re: Hydrea --update after 2 years--
« Reply #10 on: September 27, 2011, 07:58:10 PM »
With hope the platelets will go up and up. (I would not mind to give your son some of my own (I am alwaysin the high range) but sadly it does not work so easily.) Keep us up to date.  :hugfriend

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Offline sah

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Re: Hydrea --update after 2 years--
« Reply #11 on: October 01, 2012, 04:45:01 AM »
Hi Manal,long time no news from you .Hows Ahmed doing?Best wishes and tc.

 

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