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Hello every one and Asslam-o-Alaikum.

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Offline bhatti

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Hello every one and Asslam-o-Alaikum.
« on: February 06, 2009, 07:19:46 PM »
              I am father of a thal major child aged 4 years. I have joined the forum few days before. I was collecting the information about ASUNRA, and by chance I see the Thalpal site. Thalpal do'nt allow me to exit without registering my self. It is a very nice and helping site for thal patients ever I have seen.
                  Hoping a informative support by admin and you all people. Thanks.  God bless you all.
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Offline Zaini

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #1 on: February 06, 2009, 07:40:15 PM »
AOA Mr Bhatti,

 :welcome2 Please feel free to ask if you have any questions in mind,my daughter has started Asunra last month,please inquire about anything which may confuse you.
We are all here to help.

Zaini.

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Offline Sharmin

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #2 on: February 07, 2009, 12:40:37 AM »
Bhatti,

We are very happy to have you here!  Please feel free to share and ask anything that you feel!  We are happy to help.  Your child is adorable, god bless:)

Sharmin
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Sharmin
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Offline Manal

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #3 on: February 07, 2009, 01:45:20 AM »
Hello Bhatti and welcome to the site. Please feel free to share your expierence or any concerns :wink

manal
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Offline Lyanne

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #4 on: February 07, 2009, 02:48:49 AM »



Hi there Bhatti!

   Welcome! We are hopeful many thal patients and friends as well that could really benefit in these forum. As it s really educational, helpful and fun..... Don't hesitate like Zaini said you're welcome to ask anything confusing to nor just wondering about anything thalassemia.  :hugfriend
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LYANNE :yahoo
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Offline anjjela

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #5 on: February 07, 2009, 05:18:01 AM »
Walaikum Assalaam Bhatti

welcom to thalpal..u'll surely get a lot of information u require abt Asunra and other queries concerning thalassemia...I have also started Asunra recently...All d Best

regards
angela
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Offline bhatti

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #6 on: February 10, 2009, 05:54:58 PM »
     Thank you very much  ZAINI,SHARMIN,MANAL,LYANNE and ANJJELA. I am greatfull to u all friends for being so supportive.

                     Mujtaba in on Desfral and Ferinil(Defriprone). I just heared that ASUNRA can replace the injecting medicine. I realy want to save Mujtaba from the needle pain. Pl indicate me the right path.

            Thanx you all people once again.
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Offline Manal

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #7 on: February 11, 2009, 02:03:08 AM »
Hi bhatti

There are two ways of taking Asunra. Either alone or with a combination therapy with desferal. It all depends on the level of iron overload and definetly the combination therapy (Asunra & desferal ) chelates more iron from the body.

At the same time, it is not recommended taking Ferinil/Kelfer/L1 with Asunra

How much is the ferritin level of Mujtaba?? Have ever made him a ferriscan (MRI) on the liver to measure if there is iron overload in the liver or not ????

manal
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Offline Zaini

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #8 on: February 11, 2009, 03:03:42 AM »
Hi,

Since you are from Karachi,which hospital do you go to for transfusion?
What are Mujtaba's ferritin levels right now? I doubt if a doctor here will support the idea of combination therapy of Desferal and Asunra,but you can start Asunra alone,my daughter started it last month.Please update us about Mujtaba's ferritin so we can guide you more properly.

Zaini.
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Offline bhatti

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #9 on: February 11, 2009, 04:26:15 PM »
                    Thanx a lot Manal & Zaini.

             Mujtaba's Serum Feritin is 2460 ng and taking transfusions from Fatmid Foundation. Some how we are also consulting with Dr. Shamsi.

             He is taking Desferal at alternate days and ferinil 1000 mg per day. liver and splin is little bit oversized.

                                     Hopping for supporting advises. THANX TO ALL
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Offline Zaini

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #10 on: February 11, 2009, 06:52:30 PM »
Mr Bhatti,

Dr Shamsi is a good doctor,of all the doctors i know here,he is a bit inventive one,can you ask him what does he think about combination of desferal and Asunra,tell him people are using it in other countries like US and Canada.

As for ferritin,it's a bit high,what is his weight? Dose for Ferinil is 75 mg/kg,please calculate the dose accordingly.What is the duration between his transfusions and what amount of blood is he getting?

Zaini.
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Offline Dori

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #11 on: February 11, 2009, 07:10:01 PM »
 :welcome2

I hope you like it here and I wish you lots of luck with getting the ferritin down! Mine is currently 2400 so we are at the same level.

Kind regards,

Dore
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Offline nice friend

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #12 on: February 12, 2009, 06:43:42 AM »
Hi Bhatti Bhai ,
How  r  u ?. :wecome2 . i hope you're getting the your concering answers , keep it upp broo and keeo asking bcoze \ pocho gey nahi tou jano  gey kaisay ???/ = ( Ask to Know abt anything ) .
anyways it was my kidding style   . i hoe your kid will b super fit  cool and fine, enjoying his life with full coulors of life . dont hesitate to ask anything , we are here to answer  ahum ahum..cough....cough .. sorry buddy winter and cold like a brother and sister wait i will right back after getting advised to the doctor . :grin

Best Regards
Take Care
Umair
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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
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Offline jade

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #13 on: February 12, 2009, 08:07:02 AM »
Hi Bhatti

Welcome.
Your kid is really cute.  You will receive very good advices from friends here.  I hope that you will log on often enough to get information.  Take care of your little one.

Before starting Asunra, i think you should check his kidney  and liver function.  Isn't it guys???Please confirm.

Wish you good luck with Asunra.
Jade

 
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Offline Zaini

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Re: Hello every one and Asslam-o-Alaikum.
« Reply #14 on: February 12, 2009, 09:29:07 AM »
Jade you are exactly right,

Before starting Asunra one should be checking creatinine and SGPT levels,i am sure your doctor will ask for the tests before prescribing Asunra.

Zaini.
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