Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: POAR on August 23, 2011, 09:30:34 AM
-
My son is 21 month old, his current ferritin level is 1819 ng/ml . Is this alarming, we have doctor appointment in the next month. Just wanted to know what is the threshold to start Iron Chelation.
-
Some more info about my son.
He is an E-Beta Thal and under transfusion from age of 6 month, his current weight is 10.5 KG..
Waiting for your responses.
-
Hi Poar,
Generally chelation is begun once ferritin rises above 1000, so he is due to begin. Some doctors will advise waiting until 2 years old but there is no reason to wait.
-
Hi POAR,
my son is 13months old and his ferrtin is reaching 879 now. the Dr said he will soon starting his desferal when his ferritin reach/ above 1000. but the problem is,we don't have the machine. it is too dificult for us to get one. my point is, you better start the desferral now as all of us know that iron is the #1 killer.
-
Thanks a lot for the reply. Dr told about oral medicine previously. We have appointment next Saturday. Hope he will prescribe some oral chelator.
Regards.
-
We have visited our Dr yesterday and he has prescribed Asunra 200mg once in a day 30mins before breakfast by mixing with fruit juice. My son's weight is around 11Kg now. Is this dose safe for a 2years old kid?
-
Yes, it is a safe dose, but to start you may want to try half that dose for a week or so until he is used to the drug.
-
Hi Andy n everyone,
My son is 2.4 yrs old and he started taking Asunra 100mg 3 mnths back when the level was 2000 but we checked the ferritin today n it has increased to 2315. Please advise.
-
Binita - There have been many reports of increase in ferritin levels when starting Asunra (also known as Exjade). The key is to keep taking the medicine regularly and check it again. There have been reports of drop in ferritin later for those that have continued with Asunra (Exjade). Hope that is the case with your son too.
-
What is his weight and what is the dose of Exjade taken daily?
-
Hello Andy,
Right now he is taking 100mg of Asunra n is 12 kgs.
Thank You
-
Exjade is recommended at a dose of 30 mg/kg body weight for normal chelation. 20 mg/kg is considered a maintenance dose for patients whose iron is under control. However, the child is quite young so a full dose may not yet be desired because of drug side effects. Since he has been on that dose for a few months, as long as he has had no serious reactions, it would be safe to double the dose for a few months. If that dose seems suitable after a few months and the ferritin continues to rise, you should again consider raising the dose by 100 mg to 300 mg daily. Your eventual goal should be 30 mg/kg but with young children it's acceptable to slowly raise the dose to the desired level so that side effects are kept to a minimum.
-
Hi Andy,
Thank You for your advise. I met krishna's doctor today and he asked me to increase the dose to 300mg at once. Is that all right to proceed with.
Another question when I asked him about cord blood transplant he said a Direct NO...NOT for Thals. We are planning for a second baby but even planning to get it checked when I am 12 weeks pregnant if the bone marrow matches but what if it doesnt match.
I am too confused after hearing a No from him. Please advise.
Thank you .
-
Hi Narendra...sorry missed out ur post. Thank you for your reply as I was relived after reading your msg and doctor increased his dosage to 300mg today. Thank you once again.
-
Recent developments in cord blood transplant have made it a safe and effective method for curing thalassemia. I would suggest contacting Dr Sodani through http://www.curethalassemia.org/free-advice-on-bmt/ and asking your questions directly. I cannot explain what your doctor said or why. But it does tell me the doctor is not current on his own education. Medicine is advancing rapidly and doctors need to catch up. Please save the cord blood. If it is a match, your child can be cured.