Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Sharmin on November 19, 2008, 05:04:22 PM
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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
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Sharmin,
Thanks for the info,are you giving little A 30 mg/kg of exjade?
Zaini.
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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 :hugfriend
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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
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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
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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.
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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
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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
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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
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thanks Sharmin of course I havea doctor.
if it make to me side effect I will feel in it.
thank you
qiji
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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
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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 :smiley
Qiji
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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
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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
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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.
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Qiji, you are most welcome.
The following tests must be done every 3 to 4 weeks if you are taking exjade - and if you are taking exjade/desferal combination therapy (under the supervision of your doctor):
CBC
Urine Protein
Urine Creatinine
Metabolic Panel including the following:
Sodium
Potassium
Chloride
CO2
Calcium
Glucose
BUN
Creatinine
Total Protein
Albumin
Bilirubin
SGOT / AST
SGOT / ALT
Alkaline Phosphatase
Ferritin
Qiji, I will also put this in an email for you.
Sharmin
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Qiji,
Please also note, that as per studies conducted by Dr. Elliot Vichinsky and others regarding exjade - and as Andy has advised in his post on this thread - exjade is only effective if taken at the dose of 30mg/kg daily - and it does take time for it to be effective.
I can understand that the cost is high, but if you do not take it this way then whatever money you do spend on it may be wasted - as the drug may not be effective at the lower dose. Taking it for a good 6 months at the adequate dose may lower your iron enough for you to continue taking desferal afterwards. But you must make sure that you can use the desferal 12hours a day. Do you have access to a smaller pump that you can keep on during the day? Some pumps are small enough that you can put them in a fanny pack and they are very little hassle to have on during the day.
Again Qiji, I am here if you have any other questions or require any other assistance.
Sharmin
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Hello Sharmin
thanks for all you do, I will take exjade 1 month to test and if it will be good and dont make to any effects, I will take it continously, I dont care for the price.
as a first time I will take 20 mg/kg as my doctor say and then I will take 30 mg/kg.
today I did the analysis that you sent it to me and I will take a result tomorrow.
thank you again
best regards
Qiji
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Qiji,
Best of luck beginning this therapy. If your body tolerates it well it can be very very effective. I am glad that you are having all of the labs done - they will provide useful information to your doctor regarding the effectiveness of the treatment - as well as how well your body is tolerating it.
1/10 patients notice a rash a short while after beginning exjade, others may have kidney related symptoms - but it does not happen to everyone. Most patients tolerate exjade very well, other than nausea during the first few weeks of use. The nausea usually subsides over time. During the first month, when you are using the lower dose (20mg/kg) of exjade you may not notice any change in your iron levels. Some people notice a spike (increase) in their ferritin levels which is a result of exjade removing iron from their organs and releasing it into their blood stream. The benefit of desferal is that it is very efficient at removing the iron from the plasma so you may not experience an increase in your ferritin level. Be sure that the synergistic effects of exjade/desferal are working to reduce the iron load in your organs and plasma - but for this to occur and for you to experience benefits it will take a few months. Do you have access to a SQUID test or ferriscan to measure your liver iron concentration? This would be an actual measure of iron stored in your liver, and a test 6 months later would confirm the actual benefits of the therapy.
I think that as you have the necessary labs and that your doctor will be closely following you - you will have good results from this therapy. Also keep a record of your transfusion frequency and volumes (how much blood you get at each transfusion) during this time.
Once again good luck,
Sharmin
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Hello Sharmin
I want to ask you when i take Exjade the Sodium, Potassium and .... it will come up or be come down ( for more info. ).
Best
Qiji