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55001 Posts in 5847 Topics by 6101 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Exjade not working; need advice!  (Read 2625 times)
Princess'M'
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« on: July 18, 2017, 03:00:56 AM »

Dear members,

My daughter, who will be 5 years old in September, just had her annual T2 MRI. She's a high functioning autism patient with developmental delays and current weight is 14.5 kgs.
History:
Spring 2014: started transfusions
Spring 2015: started exjade
Summer 2016: first MRI: T2 readings heart: 19 and liver: 10
Last week's MRI showed heart: 25 and liver: 16

Her hemo wants to start her on combination subcutaneous desferal 6 nights a week along with the exjade.

Given my daughter's other issues that I have listed above, it is going to be incredibly stressful for her to be on the desferal. She has just started communicating basic information and needs. These challenges are going to make it very difficult for us to remain compliant on the desferal.

When I asked about other options he said there are none. Said that ferriprox does NOT come in any form besides the pills.

After doing some research, I found that there is an oral version of ferriprox... can someone verify this for me?**

I'm baffled by these results... although we are not perfect with the exjade we are strongly compliant. How can the heart number improve while the liver gets so much worse?**

I would love to hear from anyone who can answer these questions (**) for me and anyone whose chelator did not work and your experience.

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Nomad
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« Reply #1 on: July 18, 2017, 07:45:07 PM »

Ferriprox is available in tablets and liquid form. Combination of Ferriprox and Exjade is possible! I did it myself for over 2 years with good result. Not  all Thalassaemics do store Iron the same way... some tend to gain more in liver (like me) some others more in heart... Since you live in the usa you or your doctor could ask for more information about this combination in Oakland. Im sure Andy has more advise to give...
All the best for your little girl
 
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Andy Battaglia
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« Reply #2 on: July 24, 2017, 05:03:55 PM »

Yes, as Nomad said, there is an oral version of Ferriprox. I have emailed ApoPharma to verify that it is available in the US. I will let you know when I get the reply.

If the child is currently on Exjade at 30 mg/kg, that dose can be raised to 40 mg/kg. The dose can also be split and taken twice daily. This makes it easier to tolerate and also performs better by giving a true 24 hour chelation. If there is any problem getting her to take the drug, the tablets can be ground up and mixed with soft foods.
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Andy

All we are saying is give thals a chance.
Dharmesh
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« Reply #3 on: July 25, 2017, 03:18:38 AM »

Why T2* MRI at an age of 5? Generally it is advised only at age 10.
Exjade takes time to give result and as Andy said splitting the same should gives you good result but it require utmost patience...

I am feeling sad knowing that ur daughter is suffering from autism also... Life become more difficult with that

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Start listening your body, it always gives signs
Andy Battaglia
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« Reply #4 on: July 25, 2017, 09:44:31 AM »

Oral Ferriprox IS available in the US. If you have any trouble getting it, let me know and I will contact ApoPharma again for advice.
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Andy

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Andy Battaglia
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« Reply #5 on: July 26, 2017, 05:12:41 PM »

BTW, in the US, they are doing MRI scans for iron as early as 2 years old. Not sure I agree with it.
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Andy

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Princess'M'
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« Reply #6 on: August 03, 2017, 06:38:01 AM »

Hi guys. Thank you Andy for checking up on that. Hemo has agreed to do combo exjade/ferriprox therapy and we were able to order it in liquid form.

I'm not a big fan of anesthesia either Andy. I worked in pediatric oncology for a while so I know the risks all too well. In our case though I'm glad we did it this early. Her serum ferritin is very misleading in terms of correlation with liver and heart iron. Her serum ferritin numbers don't indicate that her liver load is THAT high.

I'm going to split the exjade dose to get better round the clock coverage. It should prove to be an interesting challenge as I've been told to give the ferriprox 3 times a day.

Thanks Phoenix. The thal on a daily basis is easy to deal with... the autism stuff not so much. Thankfully she has awesome therapists who have helped her improve immensely this year.
 
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