Start decreasing Fe

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Offline Dori

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Re: Start decreasing Fe
« Reply #120 on: May 21, 2016, 04:34:56 PM »
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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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #121 on: May 21, 2016, 07:46:21 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.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #122 on: May 22, 2016, 02:28:57 PM »
If dosage are skipped regularly than it is better to give it once
Start listening your body, it always gives signs

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Offline djema

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Re: Start decreasing Fe
« Reply #123 on: May 23, 2016, 06:41:27 AM »
Hello friends ! thank You for your support.
Health to All of You , You are the best !!!
Exjade noise rarely .
drink regularly to speak ))) :blush
thank You .
Jamal :bighug

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #124 on: April 13, 2017, 02:33:33 PM »
Hi Andy and All,
M back after a long.
Feeling nice after coming here back.... :biggrin

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
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #125 on: April 14, 2017, 12:23:51 AM »
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.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Start decreasing Fe
« Reply #126 on: April 17, 2017, 04:29:39 PM »
Hi Andy and All,
M back after a long.
Feeling nice after coming here back.... :biggrin

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
Every child is special.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #127 on: May 22, 2017, 06:07:59 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, 06:44:04 PM by Phoenix »
Start listening your body, it always gives signs

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Offline Pratik

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Re: Start decreasing Fe
« Reply #128 on: May 26, 2017, 10:51:52 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!
Every child is special.

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Offline Asma Jamal

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Re: Start decreasing Fe
« Reply #129 on: January 10, 2019, 03:11:56 PM »
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
Quote
I may never prove to be good enough for every one...
but i am the best for them who Deserve me

Asma

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #130 on: January 21, 2019, 10:43:54 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?
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Start decreasing Fe
« Reply #131 on: October 09, 2022, 07:31:11 AM »
So Finally,
After 10 years , My S. Ferritin came to 624.5 ng/ml. So now it's below 1000 ng/ml.
Thank You So much Andy, for all of Your motivation, guidance and constant support which made it a reality to bring down the iron.

Now, on 500MG DFX Only per day.

Thank You So Much Thalpals...

Dharmesh  :yahoo
Start listening your body, it always gives signs

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Offline Andy Battaglia

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Re: Start decreasing Fe
« Reply #132 on: January 07, 2023, 08:05:24 PM »
Dharmesh,
That is wonderful news! I am so happy that you continue to find the inner strength to do what is necessary to maintain a good life.
Andy

All we are saying is give thals a chance.

 

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