how high is the risk of taking exjade then other iron medication?

MY daughter is just starting exjade.she is only two years old.her ferriten is around 1900 the doc said i should not worry. she has talked to the other doctors in other countries. (people dont have any symptems when there frrentin as high as 6000)she said,i dont know is its true any way the point is they are not going to MRI fo her as they say they dont do it on kids as young as sara.so how would i know what her exact ferriten is. she also told me that exjade have more side effects then other iron threpy,can any one please tell me what sort of side effects they are as im really worried.also is any one know if MRI could be done on a chaild young as two years old?
thanks all
alia

Our hematologist told us that ExJade can cause problems with vision and hearing.  Our daughter has not started ExJade yet because she in only 19 months so I do not have experience using it yet.  He also told us that being undertransfused can also cause vision and hearing problems because the bones in those areas are some of the smallest in the body and cannot expand too much without damage. 
I wish you the very best.  I know some children who use ExJade and their parents are happy with the results so far.

(people dont have any symptems when there frrentin as high as 6000)she said

Did she really say that?what kind of symptoms is she talking about? a malfunctioning heart,?an enlarged spleen? Alia i am no medical expert,but i can tell you that ferritin as high as your daughter's is pretty high for her age,my daughter is 6 and a half years old and her ferritin last checked was 1750 and it freaked me out,and i tried to convince her to take desferal 4 times a week,so, i think you should start the chelation immediately,though i don't know much about exjade,my daughter is on combination therapy of desferal and ferriprox(L1),and i don't know about the age limits for MRI,but i remember that a ferriscan was done on Canadian Family's daughter and she is also quite young.

Wishing you luck,

ZAINI.

her ferriten is around 1900 the doc said i should not worry. she has talked to the other doctors in other countries. (people dont have any symptems when there frrentin as high as 6000)

Zaini,

Sara's levels are NOT that scary.. It is 1900. Alia was referring that, according to the doctor thals with level of 6000 don't complain and say they have NO symptoms, which is true. There are lots of thals who have levels around 10000 and say, they are fine (With no symptoms), but they really are damaging the internal organs by binding to the organs. So, chelation is a must for every thal undergoing blood transfusion.

Alia --> Don't worry about MRI. Usually, around Sara's age, the ferritin level seems like what it should be for a non-chelated thal. MRI can be done later on after she under goes few years of Chelation

Hi Narendra,

Actually that was what i wanted to say,that may be her ferritin is not scary in numbers,but it can start overloading and affecting internal organs,i've seen thals with ferritin as high as 10000,but i consider even 1750 for my daughter as high,even doctors here say that according to Their standards,or shall i say according to the general condition of thal here,our daughter's ferritin is pretty low,but i want it to be even more low,below 1000 to be very exact, I idealize people like smurfette ,whose ferritin is somewhere below 300,so that was what i wanted to say,still thanx for clearing up.

Alia i didn't mean to frighten you,i just wanted you to be alert and compliant with the chelation therapy,i am sorry if i offended you.

ZAINI.

Ferritin of 6000 will cause much damage over time. A patient with ferritin that high for a long period will be more likely to have diabetes, hypothyroidism, and eventually heart failure. If this level is reached short term and corrected quickly, the long term effects may not be significant but over long periods, ferritin that high will most likely kill the patient.

Exjade is approved in the US for children two and older. Beginning with a low dosage is proving to be the best way to avoid side effects. Gradually working up to the required dose allows the body to get used to the drug. Serum creatinine levels should be checked every two weeks as exjade has caused an elevation in some patients, leading to kidney problems and even death in patients with pre-existing kidney disease. The importance of testing creatinine levels regularly needs to be stressed.

All three iron chelators have side effects and they all also work. It is much preferable to be chelating rather than allowing iron to accumulate. The effects of iron on growing children are life changing and should be avoided. Ideally, chelation should be started before the ferritin level reaches 2000 and the long term goal should be less than 1000.

Thank you so  much for your replays,its all right zaini im not worried at all yes you all that simptems can happend but i hope she doese not reach to that. yes narender and andy  is right about the simptems ,i had a long talk with sars doctor yesterday and she said that frreten high as 6000 can cause side effect if only not treated in long term. exjade is not funded here,i have to buy them,she also told they going to start her next week with exjade. I wonder if she needs to be admited for the first few days to see how her body would react to axjade as its her first time? thnks for the info on MRI.
Sara

Hi,

We believe in prevention rather than correction. Our target is to keep the ferritin level as low as possible from the beginning so as to avoid any panic. My daughter's last known ferrtin was 2800 in July 07. The next test is due by end of October. Hoping for the best.

I agree with canadian family prevention is the best! is it not good in any case
to have a ferritin level of 6000.Thats just way too high.I was told by my doctor
that ferritin levels over 2000 can cause damage over time.I know 1st hand
its not good to have ferritin levels 6000 or even 10,000 my brother who had
thal major sadly passed away a a result of having a ferritin of between 6000-10,000
as it caused him heart & renal failure in which resulted in his passing.So for a child of 2 years
old Alia you have a chance while your daughter is young to keep her ferritin down & give her
the best chance in life.Another point i wanted to add is im very surprised your doctor is
letting your daughter start on exjade at the age of 2 as i was told no children under the
age of 6 is supposed to have it?

I was 3 years old (1967) when they started to give me Desferal intramusculair twice a day. Desferal was quite new tat that time. My parents weren't told anything, so I have no clue how high my ferritin levels were at that time. My mother injected me twice a day in a muscle in my thigh, later on she injected it in the upper quarters of my bottom.

What I know of Desferal is that it has sever side-effects, pretty similar to iron-overload. Including hearing and vision trouble. I know from experience and talking with another DBA-patient, that some side-effects are reversible when they lower the dose.
I just read about Exjade, and I found that the side effects are pretty similar to the side-effects of Desferal. I tried L1 (Deferiprone) at a trial back in 1990, but had to stop immediatly because it damaged my bonemarrow.

Hope I didn't upset anyone with my information.

anae, 40+ , transfusion dependent since birth, and still goin strong

Hi Anae and welcome to the site

We are happy that you joined here. If it doesn't bother you, would you be okay to tell us why you decided to stop iron chelation as mentioned in your biography though you know the consequence of this?
Please ignore my post if you don't feel comfortable talking in this issue

Any way, take care

Manal

Hi Anae,

to the family!

Can you tell me how your condition is different from Thalassemia? Is there any other way besides transfusions to increase your blood counts like EPO injections?

Hi Jackie,

Welcome aboard  , we are happy that you joined this forum, i know how much depressing a chronic illness can be,i hope and wish whatever decision you make will bring out the best for you.

LOVE ALWAYS,

ZAINI.

sorry i was away,first of all about giving exjade in the age of two, the doctors here in newzealand has given exjade to other pationts so they seems to do well with it. they say it is good for sara but i dont know yet as she has not started yet. we are still trying to get it funded. sara,s ferriten is now 1700,its been like this the last three transfusins so iam hope she do well with it as so far she nver had major problems i hope exjade doese give any either