Discussion Forums > Thalassemia Major
Question for Andy...
Emby:
He loves tea!
The T2* for liver was done with MRI. He would be having the Ferriscan done very soon inshaAllah.
He has been discharged and is back home..quiet weak...but thank Allah getting better. It was such a scare and I would say drink, drink and drink even if you think you have drunk enough then still drink with Exjade and if you feel something is not right then get it checked straight away..you know your body better than anyone else and as a parent you know your child better than anyone else.
Emby:
Thank you Lena and thank you Andy... :heartpink
Emby:
Andy you mentioned that Amylase problem has been reported regarding Exjade so can you give me that information. H's Dr said that there is no connection with Exjade and that she contacted them but they do s not have any reports this. She did say that everything else was caused by Exjade.
Andy Battaglia:
It's not a common side effect bit increased amylase is on the list of observed side effects in the Exjade study that followed sickle cell patients for 5 years. If levels return to normal while not using Exjade, I would suspect Exjade as the cause.
If his Ferriscan shows a high LIC, there may be no choice but to use desferal.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3170481/
--- Quote ---Serious AEs were experienced by 131 patients (70·8%) overall. The most common serious AEs, which were reported in ≥10% of all patients, were sickle cell crisis (n =67, 36·2%) and pyrexia (n =34, 18·4%). Deferasirox was permanently discontinued in 12 patients (6·5%) following serious AEs. Nine patients (4·9%) had 17 serious AEs that investigators suspected to be related to deferasirox treatment, including gastrointestinal disorders (n =3), sickle cell crisis (n =2), lymphadenopathy (n =1), tinnitus (n=1), granuloma (n =1), tuberculosis (n =1), spontaneous abortion (n =1), pulmonary thrombosis (n =1), increased alanine aminotransferase (ALT; n =1), increased aspartate aminotransferase (AST; n =1), increased blood alkaline phosphatase (n = 1), increased blood amylase (n =1), increased blood bilirubin (n =1), increased lipase (n =1) and increased transaminases (n =1).
--- End quote ---
Emby:
Yes the amylase reading went up to 900 but now has come down to a normal level,l 36. His Dr said that it wasn't pancreatitis, with such a high reading, because he didn't have the symptom that goes with it... agonising pain in that area. I also think it had to do with the Exjade.
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