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





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Author Topic: Start decreasing Fe  (Read 72035 times)
Himanshu Kumar
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Aditi


« Reply #105 on: December 27, 2015, 10:54:33 AM »

Some Happy updates on Christmas 

My Ferrtitin is 477 ng/ml

Cardiac T2* Score 8.32 = Iron Moderate

Liver T2* Score =  Iron None

On Thalidomide , Wheatgrass

No blood transfusion since last 4+months

 


This is an incredibly great news. Possibly goes to suggest that thalidomide + wheat grass combination effect is slow but definite. May be the combination works best when the iron accumulation is lower.
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Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.
Andy Battaglia
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« Reply #106 on: December 27, 2015, 09:08:22 PM »

Lokkhi,

A good nutritious diet and supplements like wheatgrass, vitamin E, B vitamins, folate and magnesium are needed to build and maintain healthy red blood cells. 
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Andy

All we are saying is give thals a chance.
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« Reply #107 on: February 15, 2016, 02:23:23 PM »

Wow! This is a case study that should be given to every thal!
Amazing work Dharmesh! Truly motivated after reading your story.

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Dharmesh
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« Reply #108 on: February 16, 2016, 12:06:38 AM »

Glad to know that it helped you.

Thanks !!!

For iron chelation i have only one motto

"Fire in the hole"
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Start listening your body, it always gives signs
Dori
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« Reply #109 on: February 16, 2016, 03:45:02 AM »


CONGRATULATIONS!

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Dharmesh
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« Reply #110 on: February 16, 2016, 10:50:01 PM »

Thanks Dori.

Happy to see you again
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Start listening your body, it always gives signs
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« Reply #111 on: February 17, 2016, 01:38:10 PM »

Thanks Dori.

Happy to see you again

Likewise! I just achieved similar results. I do not have  iron overload in the liver. I take Exjade / Ferriprox. Are there studies underway? A lot of people seem to be afraid to try something off label. (which I can understand but...) My ferritin is yet a little bit too high to share here ;)
Thanks to Nice Friend for telling me to see my friends from this beautiful community.
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Dharmesh
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« Reply #112 on: February 18, 2016, 06:04:32 AM »

http://www.thalassemia.org/learn-about-thalassemia/clinical-trials/

http://thalassemia.com/research-open-studies.aspx#Fertility&gsc.tab=0

above are the studies and ongoing research, unable to give u specific ans.
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Start listening your body, it always gives signs
Andy Battaglia
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« Reply #113 on: February 18, 2016, 06:46:36 PM »

Some centers in the US use the Exjade/Ferriprox combination. They have had great success with it and find it works as well as desferal and Exjade together. Doctors don't actually have to wait for completed trials.
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Andy

All we are saying is give thals a chance.
Dharmesh
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« Reply #114 on: February 19, 2016, 02:03:01 AM »

Andy,
Recently a mumbai based Clinical hemo. told us in seminar that now First line of treatment is DFX and when it stays ineffective they use DFP as second line of treatment. So the Exjade and Ferriprox combo is widely acceptable in medical fraternity.
The results are excellent.
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Start listening your body, it always gives signs
Andy Battaglia
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« Reply #115 on: February 21, 2016, 08:21:44 PM »

Good to know. The combination works well. Doctors refusing it to patients are doing them a disservice.
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Andy

All we are saying is give thals a chance.
djema
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« Reply #116 on: May 18, 2016, 07:42:44 PM »

Hello friends
thank you that You exist here .
yesterday has received analyses of ferritin for my daughter , the results of the us upset 3060 , 2 months ago was 2970 !
Read Your posts , Your advice and the results are very important for my daughter. We learn from You how to fight , thank You friends .
My questions -
what is the remedy for Kelper? what is it?
1000mg of Exjade , folic acid, vitamins , hydrea 1 capsule it takes Aysel daily .
what you need to do more? it is important to reduce the ferritin !
daughter is 11 years old, weight 28-29 kg of transfused blood every 3-4 weeks .
PS sorry for the mistakes . I do not know English .
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Dharmesh
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« Reply #117 on: May 19, 2016, 03:36:34 AM »

Hello,

There seems no difference in Ferritin reports i.e. 2970 and 3060 as ferritin is highly sensitive.
However, it should be repeatedly monitored.

Kelfer is another iron chelator just like exjade

To reduce the ferritin dose should be adjusted as weight, blood requirement and ferritin increase/decreases.

Report is in Russian so commenting on it is difficult.

Thanks for the appreciation
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Start listening your body, it always gives signs
Andy Battaglia
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« Reply #118 on: May 19, 2016, 06:19:58 PM »

Split the dose of Exjade and have her take 500 mg in the morning and 500 mg later in the day. This will provide more chelation without raising the dose. Make sure no doses are missed. If she has trouble taking the drug in liquid, it can be crushed and mixed with most soft foods. It is most important that every dose be taken.
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Andy

All we are saying is give thals a chance.
djema
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« Reply #119 on: May 20, 2016, 07:13:53 AM »

Hello friends.
thank You for the answers.
Yes ,we are taking Exjade 500 mg morning and 500mg in the evening.
every day. used to miss a medication
health to you all !
 
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