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55171 Posts in 5880 Topics by 6167 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: new year new way  (Read 11133 times)
baal
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« on: December 29, 2010, 04:50:49 PM »

hi pals

today my doc offers me that we can

give HU a chance to work on me.

i start in a few days on a small dose.

elektroph. test is done today.

wish me luck.         panos
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Andy Battaglia
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« Reply #1 on: December 29, 2010, 05:29:28 PM »

Good luck Panos. Keep taking L-carnitine also, as it does help hydroxyurea work better.

I think we will be seeing more majors try hydroxyurea in the future, as doctors see if they can extend the period between transfusions.
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Andy

All we are saying is give thals a chance.
Manal
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« Reply #2 on: December 29, 2010, 06:03:36 PM »

Best of luck Panos

Please keep testing kidney and liver functions  since you are on chelators and you are now adding HU

manal
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Sharmin
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« Reply #3 on: December 29, 2010, 07:26:16 PM »

Best of luck Panos!

I hope it works really well for you:) 

Sharmin
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Sharmin
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« Reply #4 on: December 29, 2010, 08:23:34 PM »

All the best,Panos!
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Love and luck to all...
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« Reply #5 on: December 30, 2010, 03:17:44 AM »

best of luck!!!!
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baal
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« Reply #6 on: January 07, 2011, 08:48:22 PM »

hi

theres now  a week on HU...
on monday i made first check up
and the results from the electrofhoresis test...
feeling well for the mom.,with the exeption of some
terrible headache....                   panos
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baal
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« Reply #7 on: January 10, 2011, 08:36:49 PM »

hi friends

here now the results from the electroph.-test,and i have some
questions for u too.

the results are from 29.12.2010:
hb  9,8     (pre-transfusion)
hämoglobin S        0
HbF                     14,1
hba1                    71,1
HbA2                    3,9


today my hb was 10,4 (after 12 days) and i didnt get blood.
my doc raisses the HU to 1000mg per day and we check
the electroph. next week again.

so here are my questions for the moment:

what is the goal for the HbF ?
at witch hb-level i have to transfuse ?
what is the maximum dose for HU (my weigth is 84 kilos)

please help me so i can discuse it with my doc.....         panos
« Last Edit: January 10, 2011, 08:50:23 PM by baal » Logged
Andy Battaglia
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« Reply #8 on: January 10, 2011, 10:04:44 PM »

Panos,

The dose of hydroxyurea per day is in the range 0f 10-20mg/kg. A dose of 1000 mg is in that range for you. The dose is sometimes fine tuned over time for optimum results. It depends on the physical condition of the patient, but once Hb drops to 8 in a major, a transfusion should be given. The fetal hemoglobin level should show a continuous rise, as HbF replaces the HbA you receive from transfusions. There is no particular level of HbF to reach, but you do want to see a rise. The goal is to increase the interval between transfusions by raising the HbF enough to compensate for the lower amount of HbA you receive with fewer transfusions. L-carnitine and magnesium have shown to have a positive effect on Hb level when taken with hydroxyurea.
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Andy

All we are saying is give thals a chance.
Dori
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« Reply #9 on: January 11, 2011, 06:16:23 AM »

Congratulations Panos, I hope it will help you. So please keep us up to date about the road you travel.
Off-topic: Do you plan to attend TIF's conference in Antayla Turkey in May? If not, I will try to my best to attend those about HU. The medication had a name change last year... No idea what, but I know it has changed.
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« Reply #10 on: January 16, 2011, 12:29:45 PM »

congrats panos .. .

Best Regards
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
baal
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« Reply #11 on: January 19, 2011, 04:41:39 PM »

hi

today i have done another ferriscan....

last day i had a pretty chat with

cherry from new sealand about HU...

she gives me motivation for my try....

thanks sweety one more time .....

i am feeling very well.       panos
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Sharmin
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« Reply #12 on: January 19, 2011, 05:32:13 PM »

Baal,

I believe your ferriscan results will be great.  I wish you the best of luck with HU.

Sharmin
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Sharmin
baal
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« Reply #13 on: February 04, 2011, 01:15:45 AM »

hi

thx sharmin for ur wishes...

still waiting for the results...

i am feeling well, the ferritin stays stabill

at the 500-level...and something to recordnises...

its now the 4th week without transfusion.   panos
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baal
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« Reply #14 on: February 04, 2011, 06:27:22 PM »

today i have got tha ferriscan-results

is coming down from 5,9  to 3,2

i think i am on the rigth way....

thank u all.....kisses panos
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