pls guide me : desferal

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pls guide me : desferal
« on: September 24, 2012, 05:19:34 AM »
Hi all,

As my 3 yr old daughter's ferritin came out to be 3219 last report, doctor says, during next transfusion we will give desferal after blood transfusion. Pls guide what is this and how it is given and how much time it takes?

is it just like blood transfusion or painful or something? Is it necessary?

Pls guide me. Thanks.

Rims

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Offline Pratik

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Re: pls guide me : desferal
« Reply #1 on: September 24, 2012, 07:12:39 AM »
I think your doctor is taking decisions in a hurry. I would advise you to continue Asunra only for now, it really works!

And before that, as I said, when you do BT this time, get ferritin checked again and tell us what reports say.

-P.
Every child is special.

Re: pls guide me : desferal
« Reply #2 on: September 24, 2012, 10:03:01 AM »
Thanks pratik,

will follow yr advise but thento pls give me idea about desferal.
Pls answer all my questions .

Thanks.

Rims

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Offline Dharmesh

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Re: pls guide me : desferal
« Reply #3 on: September 24, 2012, 10:20:44 AM »
Hi Rims,
I think the following link will help you somehow, it is not totally related because it is on 24 hrs IV Desferal and Your daughter is advised only on Transfusion day, but it's worth it.
http://www.thalassemiapatientsandfriends.com/index.php/topic,2315.msg20837.html#msg20837

Desferal can be given in following ways and which way is used by your doc. is not clear.
1. S.C. Desferal with pump for 6-8 hours
2. I.V. Desferal with Saline.

Dosage will decide the hours of Desferal.
At some places in India doc. do give desferal on Blood Transfusion Day.

But the only concern i feel is that the Age is only 3 years of your daughter, so ultimately you have to decide what to do. Other members and Andy can help you more.

Hope it help.
Do Chelate.
Start listening your body, it always gives signs

Re: pls guide me : desferal
« Reply #4 on: September 24, 2012, 10:33:24 AM »
Dear other members,

Pls advise. I am confused.

Rims

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Offline Andy Battaglia

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Re: pls guide me : desferal
« Reply #5 on: September 24, 2012, 02:41:10 PM »
You need to ask your doctor which method will be used. Will it be IV desferal in the hospital or subcutaneous desferal that is administered using a pump. Both require needles to administer the desferal.

I do not feel that short term use of desferal such as IV at the time of transfusion has much value, because of the limited time period the chelator is used. Adjustments to the Asunra dosage might be more beneficial.
Andy

All we are saying is give thals a chance.

Re: pls guide me : desferal
« Reply #6 on: September 24, 2012, 05:01:18 PM »
Hi,

It is not you, I think your doctor is confused. I agree with Andy and wonder why give desferal one time (it has no value in it). Desferal if administered, must be given for number of months to see any effect on ferritin. You are already giving Asunra (that should be enough). All you need is to adjust the dosage as discussed previously. Is he not the same doctor who told you to start kelfer few days ago and now he is saying desferal....

I am extremely worried if the doctor is going to charge you for one time desferal infusion. You need to ask doctor what is his plan? How long he plan to give desferal and why ???? is he going to adjust the exjade dosage .....
Regards.

Re: pls guide me : desferal
« Reply #7 on: September 25, 2012, 05:40:10 AM »
Dear all,

Thank u for yr response. As i told u earlier, after getting the last ferritin report of 3219, doctor advised to change to kelfar from asunra and also to give desferal during next transfusion.

But i too am not convinced. We have continued with asunra. Have increase the dose from 200 mg to 300 mg (her weight is 12 kg). Should we say NO to desferal during next transfusion? pls advise.

As a chelator  - only asunra is enough for her at this age and this much ferritin? Pls guide me.

Many thanks.....

Rims

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Offline Pratik

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Re: pls guide me : desferal
« Reply #8 on: September 25, 2012, 06:48:25 AM »
Dear all,

Thank u for yr response. As i told u earlier, after getting the last ferritin report of 3219, doctor advised to change to kelfar from asunra and also to give desferal during next transfusion.

But i too am not convinced. We have continued with asunra. Have increase the dose from 200 mg to 300 mg (her weight is 12 kg). Should we say NO to desferal during next transfusion? pls advise.

As a chelator  - only asunra is enough for her at this age and this much ferritin? Pls guide me.

Many thanks.....

Rims
Hi Rima,

The dosage increase will definitely aid your daughter and will help a lot. As we discussed previously, that it is good sign that it shows increase because that means the free iron is about to get removed and the process is already started. Do ferritin this time and we shall see what the reports say. When is her transfusion planned?

And no, I don't think your daughter needs desferal at this point, the doctor is jumping to conclusion at very fast pace. I would definitely say no, and that too, for one day, it has effect as much as nil.

Yes, Asunra is well enough for her age and as per her ferritin report.

Don't worry dear, all that happens, happens for good. :)

-P.
Every child is special.

Re: pls guide me : desferal
« Reply #9 on: September 25, 2012, 07:54:13 AM »
Thank u Pratik and everyone.

Thanks soooooooo much. It helps a lot.

Pratik, her next transfusion is on 13th Oct.

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Offline Dharmesh

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Re: pls guide me : desferal
« Reply #10 on: September 26, 2012, 07:08:00 AM »
Hi Angel's Mom,

The study shows that S.Ferritin increases in the first year of therapy and in some patients till the second year after that the S. Ferritin starts decreasing, if patient take maximum dosage. It happens because Asunra clear the iron from organs first and then the ferritin.
In your case dose was low till now. So you need to keep patience and keep the dose at upper level as suggested by Andy in earlier post.
No need to worry. Give some time to Asunra to work effectively.
Monitor Weight(adjust the dose accordingly) , SGPT, S.Creatinine monthly and S.Ferritin every 2-3months.
Start listening your body, it always gives signs

 

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