Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: baal on December 29, 2010, 10:50:49 PM
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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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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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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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Best of luck Panos!
I hope it works really well for you:)
Sharmin
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All the best,Panos!
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best of luck!!!!
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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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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
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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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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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congrats panos .. . :congrats :)
Best Regards
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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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Baal,
I believe your ferriscan results will be great. I wish you the best of luck with HU.
Sharmin
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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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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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Congratulations my friend. You have officially reached the safe range for liver iron concentration. The range of 3.2 and below is considered to be the optimal range for transfusing, chelating patients. I am very happy for you, Panos. The change in your health over the past 5 years is remarkable. :thumbsup
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Congratulations Panos!!!!!!!!!!!!!!!!!!!!!!!!!!!! You did not forget to celebrate that well? Stuff like that need to be celebrate. Make fun about sometimes fun and you won't forget that fun achievement and feelings!
Warmest wishes, -D
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gr8 panoz..!!!.. u did it man .. i remember once we met in chat room n at that time u was so dis-heartedly speaking abt ur life n condition ,, now see the change man ,, i know that u'll b surprised to look back and see from where u r coming back in life,,, u r a true inspiration for others man ... keep it up ,, :bighug :clap :thumbs :thumbup :hi5boys :hiyaboy ..
Best Regards
Umair
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hi
today i become electrophoreses results...
my Hbf raises from 14 to now 27,8.
i think the HU works....
andy what ur tougths about it?
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Panos,
This is good news and shows that the drug is working. Has this had any effect on how often you need to transfuse?
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Congratulations! I wished I would get that feeling again to fight everything. (I do not take any med at the moment, not even E.)
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here is a pic from the result.
yes andy,i got less transfusions the last time.
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Good results, I believe.
The different hgb thing is still different for me since it has nothing to do with pkd.. :$
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Good luck Panos and i am sure there will be more to come
manal