Discussion Forums > Thalassemia Major

Question about allergic reaction to Desferal

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LoriM:
I have a couple more questions, if you don't mind.

It seems from my reading that Desferal uses the kidneys and urine to rid the body of iron, while ExJade uses the bowels and feces.  Do I understand this right?  If that is the case and Desferal works in my child and ExJade does not, would that tell me that for some reason her bowels aren't absorbing the iron properly.  (She is and has always been constipated... even before chelation).  If this is true, wouldn't it be wise to try to find out WHY her bowels aren't extracting iron properly? 

I've been trying to find conditions that would keep her bowels from working properly, but diarrhea is always a symptom and shr does not have that.

Andy Battaglia:
At the point of excretion, the iron has already been chelated, so the method of excretion won't have any bearing on it. Iron causes constipation and this may be the cause of her constipation.

You can administer a chewable vitamin C tab at the beginning of any desferal session. C makes more iron available to be chelated so it has long been recommended in low doses when taking desferal.

Ferriscan is actually a software program developed by Tim St Pierre. The local hospital does an MRI and the results are sent to Resonance Imaging for interpretation by the Ferriscan program. It is quite accurate and non-invasive. The only problem I can possibly see is if there is a problem with the MRI machine at a specific locale. If serum ferritin levels do not support the Ferriscan findings, I would suggest having the MRI done at a different locale to see if the measurements agree. I would definitely do this before having a biopsy done.

Desensitization to desferal does work for many patients, so it is worth the attempt.

Hereditary hemochromatosis and thalassemia are not related but are found in the same populations, so there is some coincidence between the groups. When testing it may be relevant to know that the C282Y mutation is either absent or has low allele frequencies in non-Caucasian populations, so the  H63D mutation is the one to be more likely found in Asians.

LoriM:
You are amazing! :) 

Thanks! 

Waleed:
Andy,

I have discovered that I get reaction when on fast IV desferal. I got severest form of reaction that made me itch every place on my body, my skin had turned red and hives came up. This happened right when I reached home from hospital nearby. I took bath with cold water and put ice all over my body. For an hour I was like fish out of water and then things cooled down.

I searched the forum but was unlucky to find an answer. I want to know about intolerance to desferal, why some people couldn't use desferal anymore like Lisa for example.

Meanwhile these days I am 24/7 on infusion pump with 55/mg/kg desferal and 100mg/kg Kelfer, both without any complications.

Iron is very high around 7000.

atin.arora@gmail.com:
Hi LoriM,

My daughter had a skin reaction on IV sites with Desferal sometime ago but that was due to different make of Desferal she had been given.

Please try to switch Desferal (Deferoxamine) to some other make. this might help you.

Best Regards,
Atin

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