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





55001 Posts in 5847 Topics by 6101 Members
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This is Thalassemia Patients and Friends,
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Lisa Cammilleri.
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Author Topic: Did anybody's Hb go dowb after starting chelator?  (Read 922 times)
hopefulmommy
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« on: January 10, 2019, 07:40:08 AM »

My 10 year old (Beta E thal) started transfusing 8 months back . She started Jadenu 15 days back.

Her pretransfusion Hb went down to 7.5 this time, instead of usual 10/9.5.

She does not have any fever, just a cough.

I am little worried. Her ferritin is 1400 and LIC 11.

Please let me know your thoughts.

Thank you
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Andy Battaglia
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« Reply #1 on: January 21, 2019, 04:40:23 PM »

 Was she using Exjade previously?
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Andy

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hopefulmommy
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« Reply #2 on: January 23, 2019, 01:52:48 PM »

Thank you  Andy.

No, she did not get any other chelator previously.

She started transfusions from June last year-  roughly 2 bags every 4 weeks, and now 1 month on Jadenu.

Will get her  CBC done soon and keep posted.
But, the last few weeks she is having a very bad cough and 2-3 days of fever last week, hopefully that is the reason.

I also noticed that this time she  is taking very long to clear up the cold virus- ~ 3-4 weeks. Wondering if  high ferritin is the reason.

Thank you.
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Andy Battaglia
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« Reply #3 on: January 23, 2019, 04:00:48 PM »

It has been reported to me many times that some patients see an Hb dip when first starting on Exjade/Jadenu. It appears that the drug does cause some hemolysis at first, but this usually diminishes quickly and the Hb rebounds. Hopefully, this will be the case with your daughter, too.

So nice to hear from you again.
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Andy

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hopefulmommy
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« Reply #4 on: February 06, 2019, 06:12:00 PM »

Thank you Andy.

This is the 2nd time her pretransfusion level came  low-6.8.

Last month it dipped to 7.5 and then they gave 2 bags of blood.

She has a bad cough for  about 1.5 months, so wondering  if that is a reason.

Jadenu going on for 2 months.

Does adjustment to Jadenu, take so much time?

Not sure what is going on. 

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Andy Battaglia
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« Reply #5 on: February 16, 2019, 04:31:16 PM »

The adjustment to Jadenu should be complete by two months. I think being sick is more likely the reason for the drop. Even Intermedia patients who almost never transfuse will sometimes need transfusions due to illness.
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Andy

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hopefulmommy
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« Reply #6 on: March 05, 2019, 03:04:24 PM »

Hi Andy,

Thank you.

This month too the pre-transfusion level came back  at 7.5.

My kid is on Jadenu for 2.5 months...

Don't know what to think. Am talking to the doctors as to what  could be going on.

Thank you.
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