Wish us luck !!

Thanks Umair,Sharmin and Tariq,

Her SGPT this morning was 55,last month it was 59,so there is a slight decrease,but i think its a good sign.

I think i should continue with the same dose of Asunra for one more month,she is on 700 mg and her weight hovers in between 27-28 kg.what do you guys suggest?

One more thing,since last 3-4 months Lil Z's pre transfusion hb has been 9.8,so when i last went to her hemo,she said "why don't you try 5 weeks? "I am not sure about that,again what do you guys think?

Love always 

Zaini.

You shouldn't be concerned as far as ferritin is not rising i think. Let the SGPT drop a bit more before increasing the dose.

Go for 5 weeks if Hg remains above 9.5 after 5 weeks. Which i think is possible since z is intermedia and Hg doesn't drop that much in a week in them. Or you can set it as alternate, 1 Tx at 4 week and other at 5 week.

My 2 cents 

Hello Zaini

Definetly if i were you i would give it a try and transfuse every 5 weeks. You will have nothing to lose and if it didn't work you can go back every 4. But what you will gain is increasing the transfusion gap with all its benefits

Also i think that everything looks normal alhamdoullah, why not increase the dose Asunra and start the right chelation dose,you having nothing that stops you

Zaini, have you ever thought of trying hydroxurea since little Z has an intermedia mutation??

manal

Hi Zaini,
not know much about it, but Tariq and Manal are right i think ... i think, let SGPT decrease a little more , bcoze with this dose if SGPT isn't decreasing that is also not increasing and it could be in increasing trend after increasing Exjade dose ... soo thats why i think let it decrease a litlle more. ..
Hg : i think it will be good to try wat Tariq has sugested alternate gap ..

Best Regards for Lil-Z
Take Care
Umair

I think you should give it a try for a few months and than review it with the doc. Ofcourse only as Little Miss Z feels good by it.

I talked with my doc about my fe and he said this is how it works. First the patient is happy, than the patients thinks camiolle (kamille) tea should help me more [relax] and it start working and the patients fainted and believes in it again. It can take more than a year to reach this point. That was the peptalk!!
Xx Dore

Zaini,

I am glad that her SGPT value is coming down!  As for trying to go a fifth week between transfusions - Oakland said to us that it is best to transfuse at a pretransfusion hg of 95 to 100.  Perhaps you can try for 4 1/2 weeks??  Over time she will get less blood without letting her go too low. I don't think it is good to let them go down to 90 between txs. 
What does everyone else think?

Wishing lil z all the best always 

love,
Sharmin

Zaini,

Another thing that can be tried is a slightly smaller volume of transfusion.  This time lil A's hg was high so his doctor transfused 413ml of blood rather than the usual 550ml.  We will see how thing are in a few weeks. 

Sharmin

Thanks everyone for your thoughts,they are really valuable for me  .

Well my mind is a jumble of thoughts right now,what i can do and what i should be doing,i think i will try once for five weeks and see if her hb remains above 9.5,i don't wanna go lower than that,as far as the dose of Asunra is concerned,this very minor decrease in numbers made me think that may be because Lil Z was on good chelation regimen before starting Asunra,700 mg might work for her,its not necessary,but i'll just wait for a month and if ferritin increases again i'll ask her hemo to increase the dose,its really a struggle with her,she is never quite ready to increase the dose.

Manal,

Yes i have given a thought to hydrea many times,even once dr Tahir Shamsi asked me to start it,but let me tell you, our little prince Ahmad is really lucky Manal    ,coz i have seen patients who are on hydrea,and each one of them had bone deformations,i know its not necessary that it would happen with everyone,but i am just scared to try it,as we all know bone deformity is not reversible. 

Thanks for your input guys,i'll try four and a half or five weeks this time,to see if she can maintains the hb above 9.5.

Zaini.

Zaini,

I agree with you about the Asunra dose. It is best to wait and see how well she does on this dose. If her ferritin does not rise, this may be sufficient, especially in light of the fact that her chelation is being supplemented with IP6. Does she also drink tea?

Thanks Andy,

She is taking IP6,but she does not drink tea on regular basis,i am trying to make it a habit,but its taking time,what with scorching weather here,she'd take a cold juice anytime,but tea! its hard.Still i'll keep trying.

Andy,

What are your thoughts about her transfusion interval.

Zaini.

Will she drink ice tea?

As far as transfusion interval, take the extra week and see how she does. It may be pushing things but you won't know until you try and it won't do any harm if her Hb does drop during the week.

Zaini ,
if Lil-Z is resisting to drink tea bcoze of warm wwaether  but she can drink cold drink or juice na , then Why dont you Try Ice tea , that is available in many different flavours like peach and alot other .. i would to sugest her to taste ice tea ...

Best Regards
Umair

Zaini,

Perhaps you can try tea with honey in it - lil A drinks green tea with honey in it and he loves the taste. 

Good luck,

Sharmin

Thanks everyone,

I'll try green tea with honey,Thats a good idea,thanks Sharmin,and if still she doesn't like it,i'll check Ice tea too.

Zaini.

Zaini,

1- What i mean is that you use the hydroxurea with transfusion, you don't have to stop transfusion. In the last conference of Syria, there was a good lecture by Iranian hematologest who found that the usage of hydroxurea has eliminated the need for transfusion in up to 50% in the major patients enrolled in the study.

It was a big debate during the lecture because some doctors from Greece suggested trying the hydrea as a protocol for transfusing patients too. Though doctor Cappilini, announced that she was so sure of the numbers of the Iranian studies but she commented that is somehow related more to the nature of mutation of the Iranian population and that what goes for them (elimination of transfusion in majors) is not the norm for all othe rmutations.

But in some studies too it showed that sometimes the usage of hydrea with transfusions can increase the gap between transfusions. What is encourging is that if it doesn not work,you can stop it at any time.

2- If you are going to use canned ice tea, take care because almost all brands have vitamin C

3- If you are going to make hot tea at home then cool it in the fridge, don't add the honey in any hot solution. Honey should always be used in room temperature and if it is heated, some componenets of the honey change and over the very long use, it creates toxins in the liver

manal