high ferritin level

HI,
   My ferritin    level  is  very  high  am  using  ASUNRA  1000mg  per  day.It  only  remove  iron  from  organs.I  am  scared   how  to  remove  iron  from  liver  and  heart??Even  dont  know  how   much  iron  deposited  there  as  Ferriscane  is  not  available  here. .Kindly  guide  me  which  combination  is  more  effective???
           komal

Hi, I think its good to take ferriprox, it removes from heart and from all body.

Hi Komal,

I mentioned this in my PM to you, but I would like to bring it up for the benefit of all. Doses of Exjade (Asunra) have been shown to be safe up to 40 mg/kg daily. This high dose is normally used only with those whose ferritin is far too high, as is the case here. With Komal's weight, he could be taking 1440 mg daily. This would clear the iron faster. Of course, this must be done with a doctor's approval and under a doctor's supervision.

Hi Komal,

what is your ferritin level right now? I'm just asking  to see which chelation therapy would be better in your case.

Lena.

He's higher than 10,000.

The Standard of Care Guidelines have this to say for high ferritin and Exjade.

After starting therapy, increase the
dose by 5 to 10 mg/kg every three to six months based
on iron stores. A dose of 20 mg/kg per day is effective in
establishing negative iron balance in some patients.
However, a higher dose of 30 to 35 mg/kg per day is
usually required to establish negative iron balance.The dose may be
increased to 30 mg/kg per day, and in certain cases, to
40 mg/kg per day.

Andy,

I would suggest aggressive desferal-ferriprox combination therapy for Komal, but since his ferritin is so high I imagine he does not comply and that's why he is on Asunra.

Komal,

you must rush with chelation...even get an IV desferal in the hospital. What does your doctor say?

Lena.

Lena,

I think it may have been in a PM, but Komal mentioned that other chelators have not suited him, so I think raising the Asunra dose is the best way to proceed right now. I agree that IV desferal would be best, but if he can't take it, he has to find another solution.

HI Komal,
  (yeah i know its too late to say this anyway ) .....  did u ever tried Combination Therapy ... Desferal + Ferriprox or Desferal + Exjade  ??  ... in this National Thal Conference Doctors was talking abt Exjade+Desferal Combination therapy .. i m not sure when they would b starting this but i heard in a  session abt this ....  My Fe was in same range in ur  is (more than 13000 at once ) , but now its within 1000 , i m still on Combination therapy (Desferal + Ferriprox )  ...  did u ever tried this combination , if yes then, if u dont mind to share , why You quited to that and moved on Exjade Alone  ?? ..... wud u like to mention this all ... BEst of luck  , hope your Fe will b in safe range in soon future ...

Best Regards
Take Care
Umair

Guys,

Since Komal is not correcting it herself,i will,she is a girl .

Komal,

Would you like to tell us what chelators have you used in past? And what happened while you were on them? why did you switch to Asunra? Since you go to NIBD i am assuming you are under care of either Dr Tahir Shamsi or Dr Saqib Ansari?

Zaini.

What Zaini and Umair asked, I would like to know too.

Komal,

could you give us all a little more input as to your situation?
Thank you,

Lena.

Hi,
   Hope  you  all  will be  fine
 Zaini you  r  right  they  suppose  me  boy.
In  past  i  was  using  desferal  but  not  on  regular   basis.When  oral  chelator  Kelfer  was  introduced   doctor  advised   me  to  use  it,after  using  Kelfer  it  cause  nausea    vomiting    abdominal  discomfort  and  Hb  level   was  also  getting  down.Same  thing  happnd  after  using  Ferriprox.I  never  use  combination  therapy.
Doctor  suggest  me IV  desferal  but  i  takes  hours  and  hours     many  times  i  did  but  in  vacations  only.Am  very  comfortable  with  Asunra.
Please  you  people  advise  what  else  I  should  do  to  reduce  iron  faster??
I  will  visit  doctor  on  tuesday  5th January.
Zaini  am  under  care  of  Dr Saqib  Ansari.
Komal

Komal,

In my opinion - but it's only my opinion - Asunra alone will not speed things up. You need something stronger than that, more agressive and that is combination therapy or IV desferal.
Talk with your doctor about IV desferal and try to do it. This will be better than Asunra. Now we are talking about make things fast, not about being comfortable. Your priority should be to bring fe down as soon as possible.You can do it but you will need to try harder.

Lena.

Komal,

One simple thing is to arrange to take IV desferal while you are transfusing. Lisa did this with every transfusion. She also went in weekly for IV desferal between transfusions. Unfortunately, in her later years, taking desferal subcutaneously became too painful for Lisa to do often enough to keep her iron level down. Please consider adding desferal on a regular basis. It is wonderful for cleaning out the free iron that is in your blood.

Komal,

What i was able to understand through your post is that you never had any side effects with desferal,so why don't you start using it again in combination with Asunra,i know Dr Tahir Shamsi's patients are using it,why don't you ask Dr Saqib about that,once your ferritin is lowered you won't need to be on desferal,but for right now,this might be the answer.

Zaini.

HI,
  I  never  had  any  sort  of  side  effects  with  desferal.
Andy 
  Can  I  use  Asunra+desferal   combination??what  would  be  the  right dosage  of  desferal   according  to  my  ferritin??
Today   I  went  Aga  Khan  Lab  for  SF test  report  will  come  Tuesday  evening.
Komal