help me T2* heart 2.5ms, liver 2.8..

my weight is 39.9..
what is the proper treatment for my problem?
right now i'm taking 6bottle desferal(24/7) and 6tablet of L1..

Do you know your ferritin level? Have you had any test of your liver or heart to determine iron load?

HaIkEr77

Are the reading in the title of your post, the result of your T2*

Is your T2* 2.5???

Please confirm

manal

Yes, please do confirm that those are your scores. They are beyond extremely low. Are you taking any medication for your heart?

yes.. my T2 star score are 2.5... Beyond Human...
i know the normal count is 20>
my  ferritin level on jan 2010 are 1860..
like i say right now i'm taking 6bottle desferal(24/7) and 6tablet of L1..

HaIkEr77,

please tell us, where do you come from?

Lena.

i'm from Malaysia (borneo)
my age is 33..
i started using desferal about 4 or 5 years ago..

 HaIkEr77

Please, i would like to draw your attention that having a T2* of 2.5 is a really somethig so serious that you MUST act immediatly towards it. I don't want to sound harsh, all my intention is to make you understand that your heart is endangered for ''heart failure''.

The good news is that since you are here in this world, you can change this fact and we have seen many of our friends here getting rid of the iron in their heart. All it need is complete comliance and dedication

1- You must be on IV desferal  because it willl be more effective in your case.
2- As for L1,you must take 75mg per kilo, so in your case, you should be taking 3000 mg daily.
I know from my doctor that you can increase your L1 to 100mg per kilo. So i guess the 6 tablets you are taking are not enough
3- You must be seeing a good cardiologist that should  be monitering your heart until you pass this critical stage of iron overload

Please keep updating

manal

HaIkEr77,

Have you had any IV desferal? Is it possible to do where you are? A one to two week period of IV desferal would help a lot. Your 24/7 desferal chelation is very good to be doing, along with the L1. I noticed in an earlier post that you did have some joint pain from L1. Does this limit your daily dose of L1?

It will take work, but you can reverse your situation. Any iron related damage to your heart can also be reversed. You must stay on your chelation routine faithfully. After one year, your liver should be out of danger. After two years, your heart should also be out of danger. It is up to you now and your willingness to do the work, so be strong and come to us for help and support.

HaIkEr77,

What Manal and Andy have said is right. Please do something and do it now.
IV desferal is appropriate in your case. I hope you can tolerate with it. Discuss it with your doctor.
You may also increase the L1 dosage to 100mg per kilo, as it is cardio-protective.
Everything is reversible, but you must act now.
Keep us posted.

My best wishes,
Lena.

thanks u guys... about the IV desferal, how many weeks should i get that treatment??
my joint pain almost gone, now i'm increasing my L1 to 7tablet per day..

Our member nicefriend (Umair) has explained his experience using IV desferal. He was able to lower a ferritin of over 13,000 by using a combination of L1 and IV desferal. He would go to the thal clinic and have the canula placed and then go home and continue the IV 24/7. I will quote from the passage he posted on the Facebook thalpal group.

at the night of friday 16 may i went tothe clinic of our family doctor to get canula pricked from the old staff member of that clinic bcoze he is good at pricking canula ... i went there and after getting pricked the canula i came back to home and had 40 desferal vials in just 8 days ( a whole week ) at home , i administrated desferal on my own .. i kept the canula running 24 hours a day to avoid clots and blockage in the needle .. that's why canula was still in fine running condition when i decided to remove ( BTW, i removed that canula ) ... i never been admited in hospital for only having desferal/chelation ... i always managed that at home after getting pricked to nearest clinic ( our Family doc's clinic is near by our home ) .... i dont like to stay at hospital for only this hehe coze according to " an apple a day keep's doctor away, but if the doctor is cute forget the fruit " and there's no cute doctor there at the nearest hospitals ... anywayz, it was 4th or 5th IV sessiion since january .. i started IV desferal in january when 1st Andy and a few other members sugested me to start IV desferal bcoze i was having the symptoms of Congestive Heart Failure .. i tried this and found that this method is very good at quickly lowering iron level .. you can read all the story abt previous sessions and Fe test results in previous posts of this thread ...

OKEY , now about how i managed it at home :
as i know that my daily Desferal dose is 5 vials a day , i kept the drip runing all the day on slow rate to infuse exactly 5 vials in exact 24 hours ,
e.g : i started chelation at 11 pm i will take only 5 vial untill 11pm next day and then when first day's dose got finished i attached the other drip for the next 24 hour's chelation ...
its easy and same nurses managed that at hospital , but for the people who have the history of alergy to the desferal i will recommend for them to don't try this at home ...

i hope i discussed the all aspects and explained everything abt administrating Desferal at home , if i missed something then please let me know i will try my best to answer that as well as i can ...

Feel free and dont hesitate to ask if you have any questions in your mind , do ask that if you have any ..

Note : i m saying this again , dont try this at home if you have a history of Allergy with desferal , and dont try this if you're not sure you can do it ... i never experienced any side-effect of desferal nor reaction of it , i think that's why it is fine for me to do this at home .. but again saying this IF you have any side-effect, allergy or reaction history to desferal then prefer to do this in provision of your healthcare provider ..

Best of luck for chelation to all of you :
Best Regards
Take Care
Umair

Here's the link For Complete thread :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0

It is a very long thread and I don't know exactly where in that thread these instructions came from. If it is possible for you to take IV in this manner, you will find it works faster than subcutaneous injections. The alternative would be to check yourself into the hospital for up to two weeks for IV administration of desferal. Has your ferritin been checked since you started 24/7 subq desferal?

hello andy..
thanks for trying to help me with my problem..
My L1 has been increase to 8tablet/day..
My desferal still 6 vials/day..(24/7)
for now my ferritin level are 1860 so IV desferal is not recommended.. so i just continue my treatment as usually..

Hi Haiker77 ,
sorry for been late to come and help you .. Andy is right , i used to have ?IV desferal as i mentioned in my thread of which Andy quoted a post of ...  i was and still using L1/Ferriprox 100mg/kg .. but at that time i was using upto 5 desferal vials and 9 tablets of L1/Ferriprox ( my weight was 45 kg and 9 tablets of 500mg = 100mg/kg )  ...  i think having 1800 S.FE level doesn't really means r heart is clear from iron ( m i right , Andy ??  plz correct me if i m wrong ) ... my Fe was a lil higher than 13000 , and just within a year it comes to 1300 bcoze of been faithful and compliant with chelation ..  for more details plz check this thread :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0

i hope it will help u ..

Take good care of ur self ..
Best Regards
Umair

hi.. you guys..
again thnks a lot for the advice..
now my ferritin level on 27/05/2010 = 1146.71
so i need your advice again for my next step...
should i reduce my desferal and increase my L1....