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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





54908 Posts in 5834 Topics by 6080 Members
Latest Member: mareeya

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Dori
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« Reply #120 on: May 21, 2016, 11:34:56 AM »

I wish your daughter good health and decreasing ferritin reports.
Splitting the dose work very well. With Exjde ferritin sometimes increase before it decrease. That is normal. However, I hope it decrease soon.
Best wishes!
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Andy Battaglia
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« Reply #121 on: May 21, 2016, 02:46:21 PM »

It takes time to clean up the iron load. Continue with her chelation faithfully, but don't expect to see immediate results. Exjade works in the organs and tissue first, so you will not see a reduction in ferritin until the more dangerous iron has been removed.
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Andy

All we are saying is give thals a chance.
Dharmesh
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« Reply #122 on: May 22, 2016, 09:28:57 AM »

If dosage are skipped regularly than it is better to give it once
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Start listening your body, it always gives signs
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« Reply #123 on: May 23, 2016, 01:41:27 AM »

Hello friends ! thank You for your support.
Health to All of You , You are the best !!!
Exjade noise rarely .
drink regularly to speak )))
thank You .
Jamal
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Dharmesh
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« Reply #124 on: April 13, 2017, 09:33:33 AM »

Hi Andy and All,
M back after a long.
Feeling nice after coming here back....

On 23rd April, Dr M B Agarwal mumbai based hemo. coming to Rajkot for a Seminar.
If anyone has any question please post i wiil try to get the answer from him.

P.S. Dr Agarwal is well known hematologist in India for thalassemics
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Andy Battaglia
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« Reply #125 on: April 13, 2017, 07:23:51 PM »

I was fortunate enough to meet Dr Agarwal at the Pune conference in 2005. I'd like to know if he sees continued progress in blood supply safety in India.
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Andy

All we are saying is give thals a chance.
Pratik
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« Reply #126 on: April 17, 2017, 11:29:39 AM »

Hi Andy and All,
M back after a long.
Feeling nice after coming here back....

On 23rd April, Dr M B Agarwal mumbai based hemo. coming to Rajkot for a Seminar.
If anyone has any question please post i wiil try to get the answer from him.

P.S. Dr Agarwal is well known hematologist in India for thalassemics
Dharmesh,

Dr Vijay Ramanan is also hosting a conference in Surat on 24th at place of the child who is 8 months free from transfusion too. My dad is going to go. Are you coming? And guess what, who switched the sides? Dr. Nikhil Sheth will be visiting too. :D
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Every child is special.
Dharmesh
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« Reply #127 on: May 22, 2017, 01:07:59 PM »

I was fortunate enough to meet Dr Agarwal at the Pune conference in 2005. I'd like to know if he sees continued progress in blood supply safety in India.
Dr M B Agarwal emphasized on taking blood tasted by NAT method.
« Last Edit: May 22, 2017, 01:44:04 PM by Phoenix » Logged

Start listening your body, it always gives signs
Pratik
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« Reply #128 on: May 26, 2017, 05:51:52 AM »

Dr M B Agarwal emphasized on taking blood tasted by NAT method.
What is NAT method?

Edit - Saw your reply in another topic. Got it!
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Asma Jamal
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« Reply #129 on: January 10, 2019, 09:11:56 AM »

Hi,
Congratulations Dharmesh for ur consistent efforts. Ur journey is truly inspirational!!

I have the same problem of high level of iron. Its around 15000.
But my Dr has always advised me to take desferol for iron chelation. Thy are not giving me any oral chelators which i hav always requested them for. But thy hav always denied to give me asunra or kelfer. My iron level is increasing.. uncontrollable!!
Plz guide me how shud i reduce my iron? Shud i start the combination therapy my self??

Secondly, since past few years i hav spleen issues. My frequency of transfusions is 2 units every 2 weeks. My platelts are vry low. 13 thousand only & some times even less.
Now my dr hav allowed me to go for spleenactomy. So currently im planning for it.
Plz guide me abt wht precautions i need to take pre and post spleenactomy??

Andy, Dharmesh,.. plz guide

Asma
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Asma
Andy Battaglia
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« Reply #130 on: Today at 04:43:54 PM »

 You need combination chelation. Your ferritin is too high to handle with just one chelator. Any competent thalassemia doctor will tell you that. If you can manage to get the oral chelator, I can advise you on dosage.

How large is your spleen? Do you take folate?
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Andy

All we are saying is give thals a chance.
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