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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55248 Posts in 5898 Topics by 6188 Members
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This is Thalassemia Patients and Friends,
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Author Topic: HemaQuest Announces Initiation of Phase I Clinical Trial of HQK-1001  (Read 17990 times)
Manal
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« Reply #15 on: March 07, 2009, 02:23:07 PM »

Dore, actually i don't know but this medication is supposed to help in inducing the fetal HB instead of the adult HB ( in thal you are not able to produce adult HB but fetal HB can compansate) so if the enzyme you miss (pyruvate kinase) is also important in maintining the fetal HB too, so i guess it won't help.

I wonder why this enzyme is not artificially produced and is taken as shots , do you have any idea??

manal
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Dori
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« Reply #16 on: March 08, 2009, 04:24:13 AM »

No, I have no idea. On 4th October 2008 died mr. Beuthler. He was our KING of this disease. Sadly, we have (could) contact him. So I hope there are others left who will continue his work. There has been one Dutch chemist (smth like that) who did also reach on pk def. He found 60 people with pk def. in my country, and I only 6 so far. I often think about that too. Pk def. is pretty rare. Only one person; 5-yr old child from Vietnam has had a bmt. It was a succesfull one; they said. Btw the other members of his family have....thalassemia!

Dore
p.s. lot's of cats and sometimes dogs has pk def. as well.
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Sharmin
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« Reply #17 on: March 08, 2009, 02:26:30 PM »

Dore,

I am curious about whether Pk def. affects fetal hg.  I ask this because fetal hg is required before birth and during the first few months after birth - therefore perhaps the Pk def. does not affect fetal hg and in that you could benefit from something like hemaquest.

At what age did you become anemic and begin to require transfusions?  I could be wrong - but it would be nice if you could also benefit if something like this become a reality,

Sharmin
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Sharmin
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« Reply #18 on: March 09, 2009, 02:26:19 AM »

It does not affect fetal hemoglobine. To come back at the other question: giving injection of pyruvate does not help. The pyruvate must be get inside the blood cell, otherwise you can not fix the problem. That's what my father told me. He said we gonna try a less iron diet btw. And he had an other plan. We'll see what happend.

I had a transfusion on the same day I was born (in 24hours). I was born 1 month too early though. It was an exchange blood transfusion. That stupid human who did it DESTROYED my own blood. That's why it took sveral years to find out what kind of anemia I had.

Dore
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Manal
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« Reply #19 on: March 09, 2009, 05:25:15 PM »

Quote
It does not affect fetal hemoglobine

Dore, since it does not affect the fetal Hb why don't you discuss with your doctor taking fetal HB inducers like hydroxurea??

manal
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Dori
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« Reply #20 on: March 10, 2009, 01:11:27 PM »

Hi,

I dont know why he never has discussed that. I think because my pretty rare disease. On the other side I am the one who aren't jumping for this medicine. Nah, I have discussed this one with someone. I dunno, but I think I read something about kidney problems? I also want to take everything step for step. My first target in life is the ferritin and from that point I will be able to live my life completely. I am afraid that some won't agree with me, but you can always try to convince me 

Dore
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Manal
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« Reply #21 on: March 10, 2009, 07:06:20 PM »

Dore, in trying to convience you

Quote
I read something about kidney problems?

When you are on HB inducers kidney and kiver functions are monitered every month until you are sure they are not affected,them you do it twice a year. Actually it is not a must that you get side effects concerning the kidneys, but even if this happenes, once you stop the inducers eerything is back to normal

Quote
My first target in life is the ferritin
Actually by discussing the possibility of taking HB inducers with your doctor,you will reach your target much faster(lowering ferritin) because it you reacted positively to the drug, you can decrease bloood transfusion and who knows it could be avoided

manal

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Dori
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« Reply #22 on: March 11, 2009, 02:38:39 AM »

Dore, in trying to convience you


manal



Manal,

Let we move this to http://www.thalassemiapatientsandfriends.com/index.php?topic=2612.30 . I will give there an update so soon as I have finished my homework. 
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