high ferritin level

Komal,

I always think these meds should be taken under a doctor's supervision, so I think you should discuss this with your doctor to make sure you have proper monitoring. I do know people who have used both successfully and it does work to get the iron down much faster. I would suggest at least two nights each week with desferal and more if possible. The two chelators complement each other, with the desferal cleaning up the iron in the blood. Your ferritin level will drop much faster if you use this combination.

Komal,
in addition to wat Andy has said : desferal doasge isn't something to b sugested on Ferritin level , Fe level does matter a little bit in it , but weight is the main factor to sugest the right dose for patient .....

@Andy,
m i right  ??  plz correct me if i m wrong ....


Best Regards
Take Care
Umair

Desferal dosage is based on weight but the dosage can vary depending on the iron load of the patient. The absolute maximum used is 6 grams daily and this is used only under extreme circumstances when the heart is in great danger. 2 grams is often sufficient.

Hi, Every one
   Today  I  got  my  ferritin  report  and  ferritin  level  is
        SF  13689 ng/ml
Urea  and  Creatinine  report
Urea     36mg%
creatinine     0.6mg%
LFT  Report           RESULT               Ref  Range
Bilirubin   Total      3.3mg/dl               0-1.0mg/dl
Bilirubin  Direct      1.9mg/dl               0-0.25mg/dl
Alkaline phosphatase  222U/L             64-306
SGPT                    63U/L                 F 0-36u/l
Doctor  increase  my  Asunra  dosage  from  1000mg  to  1200mg  he  also  prescribed  some  other  tests.
       Random  Blood  sugar
       Ca++
       Serunm  Zinc  level  & Serum  Magnesium  level
       PO4
       Alkaline  phosphate
       Vit  D3  level
       I PTH
       ECHO  Cardiography
Its  all  about  today's  meeting  with  doctor.
Andy  please  give  your  suggestion.
Komal



 

         
         

     

Komal,


I will add my opinion here, before Andy's:

I would replace Asunra monotherapy chelation with combination therapy, especially that of desferal-ferriprox. What's more, IV desferal along with ferriprox. That is what is most needed, in your case now.That is what we, in our Thalassemia Unit, would do.When a thal's ferritin is as high as 5000 and more, he/she is admitted to the hospital for a week or so on IV desferal together with ferriprox.

Why don't you ask your doctor about it?

Lena.

Lena
  Ferriprox  not  suits  me  i  can  not  take  it  more  than  the  3  days  I  started  it  with  very  low  dosage  just  1 tablet.I  have  to  face  joints  pain,nausea  etc.Otherwise  ferriprox+desferal  is  best  combination.
Second  option  is   that  I  quit  Asunra  and  go for  desferal  24 hours  chelation.Am  I  right???
komal

Komal,

I didn't know you cannot take ferriprox. I am sorry. Next option -- maybe the only one -- is desferal together with Asunra and we are talking about desferal 7 days a week.
How do you feel to be admitted to the hospital for a week and get IV desferal? Have you talked about it with your doctor? I think you have mentioned something about this before.

Lena

Komal,

I think desferal needs to be added to your chelation. I agree that if it is possible for you, a week or two of IV desferal would be a big help. Umair was able to take the IV desferal home with him. I don't know if that's possible for you, but if so, it would mean being able to take IV outside of the hospital setting. Even taking desferal subq at home would be a help right now. You need to get that ferritin level down so that the Asunra can do a better job of cleaning iron out of your organs. Desferal works well at removing the iron from the bloodstream, so desferal and Asunra will complement the effect of each other. The other tests the doctor ordered are all good and will help to further guide your treatment. The echo test will give some indication of your heart function so this may help to determine how much urgency is needed right now.

Komal,
i want to add sumthing here under this topic :
when i startedd Ferriprox i xperienced the same nausea , stomac discomfort  .. i stopped taking it many times and started again too but finally when decided not to stop it then i kept taking that and with time side-effects disapeare away ...

when one of my thal ceter's frined started ferriprox he xperienced  the same problemes , he asked me that he is gonna quit taking this , i told him to keep taking for atleast a month IF his Counts r stable n not it downish trend (i m talking abt WBCs ) .... now , it has been more than a year since his taking Ferrriprox .... Same happened to another friend ..... all i wana say is that if ur not experience any serious side-effects like WBCs  Then if u give it a try for a lil long time mayb it suit u .... its just a sugestion based on my personal experience , m  not saying to try this without ur doctor's advice but i think u shud tallk to ur dctor abt it /.... i m saying this bcoze my personal experience with Combination therapy ( desferal + ferriprox ) were super ,, my Fe was exactly in the same range ur is ... more than 13000 .... it will take time to come down , but surely if u r determined well then one day it will b within normal range .. best of luck ...

Best Regards
Take Care
Umair

What is better example than Umair?
And I totally agree with Umair---maybe you have not given Ferriprox a chance. You, above all, can tell  if you can try it again. Whatever you do,Komal,please act fast.You can lower your ferritin level, that's for sure,but only if you try hard as Umair said.
I would go for IV desferal in hospital for at least one week, If I were in your shoes, and then desferal at home 7/7  with the highest dosage allowed according to doctor's instructions.

Lena.

Komal ,
As Andy Has mentioned abt IV desferal at home .. i never been admit in hospital for chelation IV , Subq i used to Chelate both way and yes at home .... its not difficult if desferal is completely suitable and give's nno Side-effect to u ,  ...  in my thal center ther r some patient who r at 5 days a week chelation plan , they wear 's pump on their biceps and do everything normaly , a boy oes to his shop after wearing pump  ( actuly to of my friends ggoes to their shops after wearing pump)... so , pump is not sumthing that wil bother u i ur routine work , if u r worried bcozeiof its drop reminder beep u may turn that off too ,............


Umair

Hi Komal,

when I had ferririn over 10000 Ferriprox and Exjade wasn't available. During this time I had serial problems with my hart end liver. So we start Desferal i.v. 18g in 24 hours 6 Days a week. Within a few month feritin level dropped down. Desferal dosage was reduced first to 12 g than to 8 and at last to 6 g. Within a year feritin was almost in normal range (200).

If I reached the goal with monotherapy you can achieved much sooner with combined therapy.

God bless you

Thanks  ANDY ,LENA,UMAIR
    You  people  are  right  I  have  to  go  with  desferal  at   least  1  week,In  my  case  Asunra  is  not  much  helpful  as  compare  to  desferal.Tomorrow  I  will  go  to  hospital  for  IV then  I  will  bring  desferal  at  home.
komal

I am happy for you, Komal!

If you persist and follow the right path,you will soon lower your ferritin.

Please keep us posted.

Good luck,

Lena.

Good luck Komal, be sure that we are all backing and supporting you and i am sure you are going to make it soon.

manal