Question for Andy...

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.

Thank you Lena and thank you Andy...

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.

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/

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).

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.

Lena can you please tell me how much Ferriprox and Desferal you are taking at the moment. Would help me to understand which direction to go in with H.

Andy, H's Dr wants to keep H off of any chelation for a few months  . I know that his body needs to recover from the effects of Exjade but I'm worried about iron overload. Shouldn't he be starting back with even a tiny dose of Ferriprox perhaps or to give time for his organs to recover?

I think he should wait. His organs have been through an ordeal and need time to recuperate. I would suggest natural chelators like drinking lots of tea and IP6 (inositol hexaphosphate) if you can find it. And keep him well hydrated.

Thank you for the advice 

Can anyone please advice which is better to take for Vit D,  cholecalciferol or ergocalciferol ?

Thank you.

Vitamin D3 (cholecalciferol) is preferred.

Hello Andy,

I would like to know if reading for Urea is a bit high and creatinine a bit low for thals, is this okay?
Thank you.

Emby

HI Emby,

Low creatinine is fine and it's the high end that is problematic when chelating. Low means the kidneys work well. Slightly high urea may just reflect the level of hydration during the test. It's not an issue.

Thank you Andy