Combination of Exjade and Ferriprox. Help needed

Hi,
I need some help from those of you that take/took Exjade in combination with Ferriprox.

A friend of mine, also with thal major had done recently  her T2*  mri and the result is bad. Her heart score is 8.9 - severe iron load. We had made all possible scenarios regarding what she has to do next - and when I say "we" means me and she because her doctor wasn't concern at all about the result  .
We came up with the combination of this two chelators ( Exjade and Ferriporx ) because 5 years ago she had develop an allergy to Desferal and since then she is on Exjade. This plan of treatment is not known by her doctor because he is strongly against any combination of Exjade with other chelators.  There for, any monitoring by medical specialist is kind of impossible. All neccesary test and follow up  will be done on her own.

Please advise what she needs to monitor regarding use of Ferriprox and also this chelation combination.

What are side effects that you had or is possible to have, what tests have you done? What dose she may take? Now she has 42 kg and takes 1500 mg Exjade/day -  her feritine is 300 but we decided to rule this out because she always had low levels of feritine - the only feedback is T2* next year if all goes well.

Please help because here and searching web are the only ways in going on with her treatment.

I am aware that trials including Ferriprox and Exjade were done in Greece at one time.  Since L1 has only recently been approved in North America I am not aware of the combination myself.  I think at this time the combination may be warranted - to prevent heart failure.  She will require very carefully monitoring for both drugs under the careful watch of a doctor.  Best of luck!!

The doctor found is in another contry so 3-6 month check ups will be done there but day by day it will have to be only us. Her doctor does not approve even a higher dose of Exjade in this condition, but we think that is a serious problem and will go against doctor advise.
Thanks for the support.

Hi Ana. Did your friend also have a liver scan done? Her liver iron concentration should also be known to plan her chelation program.
With Ferriprox, white blood cell counts should be done weekly, as a drop in white cells affects 1-5% of users. She shoulkd continue the normal monitoring for Exjade, also.

I always feel sad when I hear that doctors do not help their patients and thals are obliged to take their place when treatment is given.

Ana,

I have tested the ferriprox/exjade combination myself but only for 2 months. After the 2 months I dropped it. I must say that in Greece it has been given by our doctor and had good results, but there have been no clinical trials and one has to be very careful. I have not heard of any other doctor worldwide who has given this combination therapy.
You must have 100% medical coverage and not do it by yourself. On the other hand, you face a critical condition. I really do not know which piece of advice is the best. Is desferal totally out of the question? I am asking this because the best-by far chelation programme would be the combination of desferal and ferriprox at the same time.

Lena

Hi Ana. Did your friend also have a liver scan done? Her liver iron concentration should also be known to plan her chelation program.
With Ferriprox, white blood cell counts should be done weekly, as a drop in white cells affects 1-5% of users. She shoulkd continue the normal monitoring for Exjade, also.

Hi Andi,
She had t2 * done for the liver -  the result is great no iron overload
We know what to monitor for Exjade the new thing is Ferriprox because we don/t know very much about treatment plans and monitoring and also the combination.
Thanks for the answer.

I would actually suggest Ferriprox alone, as long as the liver iron is under control.

I always feel sad when I hear that doctors do not help their patients and thals are obliged to take their place when treatment is given.

Ana,

I have tested the ferriprox/exjade combination myself but only for 2 months. After the 2 months I dropped it. I must say that in Greece it has been given by our doctor and had good results, but there have been no clinical trials and one has to be very careful. I have not heard of any other doctor worldwide who has given this combination therapy.
You must have 100% medical coverage and not do it by yourself. On the other hand, you face a critical condition. I really do not know which piece of advice is the best. Is desferal totally out of the question? I am asking this because the best-by far chelation programme would be the combination of desferal and ferriprox at the same time.

Lena

Hi Lena,
Thanks for your reply. I am aware that this combination is followed by some patient with major thal worldwide, some of them i know but we do not manage to meet their doctor.
Sadlly the desferal is out because 5 year ago she had a verry bad reaction ... and following this side effects and doctor advise she end up neat to death - all her major organs were near to block down.

She is aware of the risks of this combination and the difficulty in monitoring but she thinks is the only way... We had seen that Exkade is not good at all in monotherapy.

hi ana
since a few years i am on combie-therapie
with exjade and ferriprox.
as my dr.s see that it works good for me
they prescibiate me both drugs.
in ur case i would take a small amount of
exjade (per example 500 or 750 mg)
and the full amount of deferripron.
it depends on our wheigth.   panos

Hi Dear Panos,
Have you changed the chelation schedule or You are taking the exjade on alternate day as mentioned in your other post ?
Please give info.

Right now i am taking Desferal and Asunra (Exjade).

Thanx

hi ana
since a few years i am on combie-therapie
with exjade and ferriprox.
as my dr.s see that it works good for me
they prescibiate me both drugs.
in ur case i would take a small amount of
exjade (per example 500 or 750 mg)
and the full amount of deferripron.
it depends on our wheigth.   panos

Hi,
Thank you for the answer, a friend of mine want's to take this combination, she has 42 kilos and now takes 1500 mg of exjade.

I would actually suggest Ferriprox alone, as long as the liver iron is under control.

I will suggest this to her, she doesn't trust so much Ferriprox because she took L1 and had no effect; but now she has no other possibility... we will see how it goes. I think she may start next month. I will post updates.