Philadelphia Conference: We've Been Saying the Same Thing for Years

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Offline Andy Battaglia

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At the Philadelphia conference, there was talk about how to use Exjade. There was nothing new to followers of thalpal. but it was heartening to see that two things we have pushed for several years are now widely accepted.
The first thing is how to mix Exjade. We've told you this for years and this is now widely accepted. You can mix Exjade with almost any soft food or liquid. It really doesn't matter how you take it. I've been saying this for years and I would like to quote Dr Coates here. "Take the damn drug!"

That's all that matters. Compliance is the only way to good health as a thalassemic. You have to take it for it to work. You have no idea how frustrating it is for a doctor when you are given everything you need to survive, but then you don't take the damn drug.

The second thing they talked about is something that parents at thapal developed on their own and have experienced great results using. The split dose of Exjade was brought up by Robert Ficarra, and I was actually amazed that there was no objection coming from a single doctor or even the Novartis reps in the room. Yes, split dose works and it was perfectly logical that it would. Exjade has a half life of 8-16 hours. It cannot give a full 24/7 chelation with a once daily dose. The once per day advice by Novartis is not a decision based on science. It is based on marketing, a topic I know much about and I also know much about how they came to the conclusion that the single most important thing that patients wanted was a once daily chelator. I know this because patients and parents from thalpal were interviewed about the drug before approval was sought. Yes, of course everyone is going to say a once daily chelator is great, but no one understood what the consequences of saying that would be. What we have found at thalpal is that splitting the dose accomplished several things. First, we saw a true 24/7 chelation period and patients whose ferritin levels had stopped dropping and stuck in the 1000-2000 range, were now able to continue lowering their iron stores. Next, and this was the original reason for splitting the dose, we saw a great reduction in nausea and stomach complaints. Third, we saw a drop in liver function scores. No, none of this is scientific data, but when the results have been nearly universal, we will not argue with it.

One other note I want to make about Exjade is how to start it. It's new to your body. Take your time introducing the drug. Begin with 1/3 dose daily for a week and raise it to 1/2 the second week. If no side effects are bothersome, raise the dose to full for the third week. Split the dose and take half in the morning before eating and again later in the day, Even though it can be mixed with food, it should not be taken at the same time as a meal. By beginning with a very low dose, the infamous rash will be minimized and in many patients, will never appear.

And lastly, stay hydrated. Repeat after me. Stay hydrated. This is ultimately serious when using Exjade, so pay special attention.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #1 on: July 05, 2013, 06:46:18 AM »
I'm so glad that this is now finally recognized as a fact. Our efforts have finally ripened at the end of the day.

Question about taking with food though, the evening dose, I take it after followed by some tea and maybe some snacks. Should I change this habit?

-P.
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Offline Andy Battaglia

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Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #2 on: July 05, 2013, 06:52:42 AM »
It works best when the stomach is empty. You should wait 30 minutes before eating. Exjade should also not be taken with fatty foods.
Andy

All we are saying is give thals a chance.

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Offline Andy Battaglia

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Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #3 on: July 05, 2013, 06:56:44 AM »
By the way, this is as it has always been. it has always been patients and parents who have tried various chelation methods and found what worked. The doctors don't take the meds, so they never think of these things, just as I don't consider many issues until a member of thalpal asks a question. You live it and you know what works. You tell others and the message is spread.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #4 on: July 05, 2013, 10:32:10 AM »

One other note I want to make about Exjade is how to start it. It's new to your body. Take your time introducing the drug. Begin with 1/3 dose daily for a week and raise it to 1/2 the second week. If no side effects are bothersome, raise the dose to full for the third week. Split the dose and take half in the morning before eating and again later in the day, Even though it can be mixed with food, it should not be taken at the same time as a meal. By beginning with a very low dose, the infamous rash will be minimized and in many patients, will never appear.


What we do here before starting deferasirox here is
First month @20mg/kg but in split dosage and
if liver and renal functions are unchanged
from second month @ 30 mg/kg , in split dosage
Start listening your body, it always gives signs

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Offline aaaaa

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Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #5 on: August 17, 2013, 12:35:20 PM »
I have a doubt...... whenever exjade is discussed , can I assume same for asunra ?
The important thing is not to think much but to love much, and so do that which best stirs you to love.

Re: Philadelphia Conference: We've Been Saying the Same Thing for Years
« Reply #6 on: August 17, 2013, 01:27:02 PM »
Yes, Asunra and Exjade are same.
Regards.

 

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