Hi! I'm a Newbie Here

Hi everyone, I came across this forum when I was browsing just now and it's nice to know that there's so many "Thalassemian" out there. A little introduction about myself. I'm a Thalassemia Beta Major since I was a baby and till now I'm still on monthly blood transfusion and yes, I used to be on Desferal but currently am trying the new oral pill. It's been 6 months now since I've started on the pill. Well, that's more or less about me, the newbie. 

hi olivia,
welcome to the site. you'll love it here. the people here are amazing....
and it's nice to see another person from malaysia.

Hey Olivia,   
     Welcome! This is a great place to come for information and support. Glad you have joined us. Jean :smile2

Hi Olivia,



Welcome to the group. 

Has there been any change in your ferritin level since you started taking the oral med? Is it exjade (ICL670)?

Hi Olivia,

Welcome  ....

I am from Malaysia too! From Kedah. Wow...looks like now I have two more friends from Malaysia ! I am also a Beta Thal. I started receiving blood transfusion since 6 years old. I am on desferal since 10 years old. tell me more about yourself! which part of Malaysia do you live?


Nur

Hello Olivia,

Welcome to the family! Please share your experiences with us and feel free to ask any questions that you may have in mind.

Take care!

Hi guys,
Thanks for the warm welcome. I'm from Kuala Lumpur, Malaysia and I've been on Desferal since I was 5 years old so it's been 21years!! wow... can't imagine i've been injecting myself for the pass 20years!! 
Yeah, I'm on ICL 670 or exjade currently. The first result show a drastic drop in my ferritin level from a 9000plus to 5000 (that's a 4000 different!) which of course shocked both me and the doctors but eventually last month I'm surprised to learn that my ferritin level went back up by 1000. I've checked with my doctor and she said she's gonna need more results to justify for the reason of it going up. Mind you, I did not once skip my pills. Wonder if anyone of u out there encounter this after taking the pills?? I've heard from my cardio doctor that apparently the ICL 670 is more effective in removing ferritin in the heart while the Desferal's effectiveness is seen more in the liver. Any of you know anything about this?

Hi

Welcome to the forum. Glad to read that ur on the oral med and doing well on that.

Cheers and health to you

Welcome to the site and welcome with your brothers and sisters    :hug,,, we are here all one family we feel happey for everything make you happey and we support you if there is somthing bad ....hope there is no bad thing happened to you or any one ..
               GOD BLESS YOU ALL
               KHALIFA

 hi all im a newbie too im olivia ,
ive just found out my 3yr old  son has thal minor  and this is all new to me , so any advice is greatfully recived  from what ive read  so far its helped me understand a bit more about it
                  ty all  olivia   from the uk xx

Welcome Olivia in this forum

I'm newbie, but in this forum I have already know many people  :hug

Hi Olivia,

I am starting my son who is 3 on the oral pill next week. We were from Kedah, Malaysia. The pill just got to Perth properly today. I hope he doesn't get any rash or adverse reaction to the drug. He gets some sort of rash every month, a week or so after transfusion.