Chelators and effectiveness (Desferal, Exjade)

Chelators need to be taken at a certain dosage and a certain frequency to be effective. 

A chronically transfused patient should not go more than 48 hours without chelation because when no chelator is on board free iron (which does not have anything to bind to) and is able to do oxidative damage to internal tissue and organs.  As I have mentioned in a previous thread. 

http://www.thalassemiapatientsandfriends.com/index.php?topic=2104.0

Exjade has little if any effectiveness at dosages below 30mg/kg of body weight, daily.  Doctors often start patients at lower doses to determine how well it will be tolerated by the patient.  If it is well tolerated, and things are going well then doctors should increase the dose to 30mg/kg. 

Desferal effectiveness is measured best by duration.  Ideally, desferal should be on 24/7 - but for practical reasons and because of possible toxicity this is often not the case.  However, desferal should be infused for at least 10 - 12 hours a night in order to be effective.  The exact duration is determined by the frequency of transfusions, as well as the LIC or ferritin levels.  Patients should note that infusing desferal for less than 10 hours is not adequate.  Ideally, patients should be infusing desferal 12 hours, 5 - 7 times a week. 

Best of luck and keep chelating!!! 

Please add valuable information that you all have learned to this post!!

Sharmin

Sharmin,

Thanks for the info,are you giving little A 30 mg/kg of exjade?

Zaini.

Hi Zaini,

Yes, little A was given 20mg/kg of exjade for the first few weeks and now he gets 30mg/kg of Exjade.  He is also getting desferal 5X a week (12hrs/day). 

Sharmin 

Hello Sharmin
 
I hope you are good, you say he started with 20 mg/kg and now he take 30 mg/kg and he is take desferal 5 days in a week, that's mean he take desferal and exjade together, or he take desferal some days and other days exjade.

Qiji

Hi Qiji,

He takes 30mg/kg of Exjade daily (7X a week), and he gets desferal 5X a week (12hrs/day).  As part of a trial he is on Exjade/desferal combination therapy.  As part of the study, he gets regular blood and urine tests done every 3 weeks and followed very closely.  It seems to be going well so far, I hope for the best. 

Sharmin

Hello Sharmin
thank you for info... if i can ask how many years old os your son ..
I want to take 3 days in a week Exjade and othre days desferal what you say .. I can do that.

Qiji,

My son is 10 years old, he is about 28kg.  I have been told by the best thalassemia doctor in the world that exjade is not effective if you do not take it 30mg/kg 7 days a week.  I would like to refer you to these lectures - please watch them in their entirety and take notes as they are form the top thalassemia doctors in the world:

http://www.thalassemiapatientsandfriends.com/index.php?topic=2246.0

I would not like for you to take exjade and suffer possible side effects, and having no benefits from it.  After watching these slides and hearing the lectures you will have a very clear picture of how the chelators work and you will understand why the dose I suggested is necessary.  Once again, if you doctor puts you on combination therapy be sure that you are properly tested every 3 weeks to ensure that you do not have any side effects.  Oakland generally puts patients on 7X a week exjade and (either 3 or 5 days a week) desferal.  They insist that desferal be used 12 hours.  I don't know what is practical for you - but this is what I have been told is the best therapy possible - but it must be taken under the close guidance and observation of your doctor.  We have two clinics following us.  So far it is working - I pray that it continues to work well.

Best of luck and feel free to ask any other questions and I will do my best to answer them,

Sharmin

Hi Sharmin
thank you for good info, realy you help me thank you so much .
but if you can tall me what type of analysis I need to do to know if it's make to me side effect or not.

note: if you can srnd it ti my E-mail ( qiji_soran@hotmail.com )

thank you again

Qiji

You are welcome Qiji - I will send you the list of labs required.  Please have your doctor view the Dr. Vichinsky slides - and have him contact a comprehensive thal center regarding how and why chelator doses and frequencies are set the way they are.  He should also know what to watch for and what should be tested for while monitoring you on these drugs. 

Sharmin

thanks Sharmin of course I havea doctor.

if it make to me side effect I will feel in it.

thank you

qiji

Dear Qiji,

I feel that most doctors (including my son's doctor) don't have access to complete information regarding the latest studies and information regarding chelators such as exjade and desferal - that is the reason I suggested that your doctor view the slides and perhaps get in touch with a bigger thal center such as Oakland. 

Since our visit to Oakland our doctor (who is a great doctor) has regular contact with Oakland.  I will get the lab content together and send you a list of the lab tests that you should have done.

Best of luch Qiji,

Sharmin

Sharmin

I will Wait ....

I want to ask if I take exjade for 1 or 2 months then can I stop it

thank you so much

Qiji

Absolutely,

You can stop exjade and resume desferal therapy if it does not work well for you.  On the other hand, if it does work well you may like it a lot and you can reduce or eliminate your desferal (as per your doctor's advice).  In Oakland we were told that if this combination therapy works well it will increase compliance because it is easier for patients to take exjade everyday and desferal 2 or 3 times a week - than taking desferal all of the time.  The hope is that by making chelation easier they can increase compliance. 

I am just getting some information before sending you the list

Sharmin

Hi dear
I know Exjade is easier to take than desferal, but is too expensive and here, there are not Exjade to buy, but desferal is free, but I need to use Exjade becoze of Iron level and I want to use it for 1-2 months.

Thanks Sarmin for all you do to me, realy you help me so much.

Best Regards

Qiji

Qiji,

For Exjade to be effective it has to be used daily. It also takes months to see its effect so please give it a trial at 30 mg/kg for at least 6 months. If you take it only a few days a week, the effect will not be seen and it will basically be a waste. You can start with a lower dose until your body gets used to it, but you must reach 30 mg/kg if you want to lower your ferritin level.