What's your ferritin level?

Hi nice Friend.thanks for the welcome .i  hope to hear good news about you always.NICE POEM!!!!

Hala,

Your son is a very handsome boy:)  You have done an excellent job in decreasing his ferritin with desferal. 

The rate at which iron levels increase is much quicker than the rate at which they drop.  1500 is a decent iron level for a chronically transfused patient, remember also that you have to weigh iron levels against desferal toxicity. 

It is helpful to increase the duration of desferal chelation in decreasing iron levels while keeping the same dose. Your doctor may decide to have the desferal diluted so that you can run it an extra hour each day - or so that you can add another day of the week for desferal. 

Remember, the desferal is dealing with removing the stored iron as well as the iron coming in each month therefore sometimes with the current dose you may run into an equilibrium where the ferritin levels remain within a certain range.   Increasing the duration may bring your son's ferritin into a lower range.

Best of luck,

Sharmin

First of all I would like to welcome Hala to the group...

Everyone I have met Hala and she is a very lovely person... So is her adorable son..He is cute..

A shy but very active and strong boy..who has a lovely voice... 

Keep on the good work your doing with your son Hala...

And I'll see you at the christmas picnic now..

Take care...
Theodora

qoute to Hala
Hi nice Friend.thanks for the welcome .i  hope to hear good news about you always.NICE POEM!!!!

Hi Hala ,
thanx for liking the poem . i will try my best to bring good News to share with you and all of thalpal members ....

best regards
Take care
Umair

hi, i've posted my problems on thalasemia major section, but i'm a bit surprised about yours feritin, since mine was never below 3000, and last week result was 9000, and i'm using desferal injection for 13 years now (since i was 7th) and now i'm 20. the doze was 4 bottle of 500mg desferal, taken 6 days a week.

what have i done wrong? and i've see posted about feroprox and exjade, is there another oral medicine to remove iron from our body? and at what cost? just yesterday i've been told 500mg / tablet can cost me @ 60 dollars Singapore.


please give me some information.

thank you.

Hi jlayarta,
 Welcome. You must increase desferal dosage or start ferriprox together with desferal. I do not want to be harsh on you but 9000 is too high. 30 years ago when I first started desferal my ferritin was 8000. I am trying now to maintain my ferritin level at about 100.
If you increase desferal dosage your ferritin will be dropped. You should enter an aggressive chelating scheme:You can even try 8-10 desferal vials in 60 ml water of injection.I did that when my ferritin level reached 1500 and in 3 months it dropped to 45, along with ferriprox of course.Of course, this is what my doctor has given me.I do not know about yours.Some doctors follow less aggressive schemes.
Discuss new scheme with your doctor. But do you pay for desferal? because here our insurance health system pays for it.Anyway.
Try to increase dosage, if your doctor allows it.Andy has posted the desferal dosage you must take according to your body weight. I think it is in" iron chelation corner".You will see better results.
Good luck.

Hi jlayarta,
 Welcome. You must increase desferal dosage or start ferriprox together with desferal. I do not want to be harsh on you but 9000 is too high. 30 years ago when I first started desferal my ferritin was 8000. I am trying now to maintain my ferritin level at about 100.
If you increase desferal dosage your ferritin will be dropped. You should enter an aggressive chelating scheme:You can even try 8-10 desferal vials in 60 ml water of injection.I did that when my ferritin level reached 1500 and in 3 months it dropped to 45, along with ferriprox of course.Of course, this is what my doctor has given me.I do not know about yours.Some doctors follow less aggressive schemes.
Discuss new scheme with your doctor. But do you pay for desferal? because here our insurance health system pays for it.Anyway.
Try to increase dosage, if your doctor allows it.Andy has posted the desferal dosage you must take according to your body weight. I think it is in" iron chelation corner".You will see better results.
Good luck.

Hi lena, thanks for the welcome.

Yeah I'm planning to increase my desferal dosage, what about ferriprox? how good is that compared with desferal injection and exjade?... i know 9000 is too high, in fact in the past i've reached 15.000 - 20.000 when i was 13th years old.

i wonder whats the diet method? will diet helping me decrase the feritin level?

to be frankly I almost giveup about buying desferal or exjade / ferriprox in Indonesia.

thanks a lot for the response, i'll post the details in the right topic perhaps?

Hi jlayarta ,
  to the family buddy ,....
i hope this link will b helpful for you to understad wat to do ... its all abt me and my experience.. my ferritin dropped drasticaly in past few months .. you can see all the my story and chelation and treatment plan on this thread.... check it please.. ..
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0;topicseen

once again to you  and wihc you the luck to find yor answers of ur concerns here on thalpal ....

Best Regards
Take Care
Umair

My latest Ferritin levels are 95-125 (tested 4 different times/places)!!!

So, I went to the doc to ask if I should be cutting back on Kelfer dosage - and he says NO!
First, let us see the actual iron concentration in the liver and heart - so, I am off to being inserted in a closed drawer again (which I absolutely hate) to get my T2/T3 results.

Poirot

My latest Ferritin levels are 95-125 (tested 4 different times/places)!!!

So, I went to the doc to ask if I should be cutting back on Kelfer dosage - and he says NO!
First, let us see the actual iron concentration in the liver and heart - so, I am off to being inserted in a closed drawer again (which I absolutely hate) to get my T2/T3 results.

Poirot

Be glad you have that option. My hospital don't have that stuff. Five years ago they gave me a port-a-cath*. They never noted which one i have, but i can't have a mri-scan since. 

* = other hospital

Be glad you have that option. My hospital don't have that stuff. Five years ago they gave me a port-a-cath*. They never noted which one i have, but i can't have a mri-scan since. 

Well yes, you are right in a way - but, i still hate the MRI drawers! I believe that GE is now introducing standing MRI machines in the US - if they work, that would be brilliant.

Why can you not use MRI if you have had a port-a-cath? Did it leave any metal in the body?
Also, have you looked up SQUID - whether you could use that?

Cheers

highest score 4500

congrats Buddy , for getting a high mark of ferritin .. i
but plz now reduce it , and take it below 1000 ...

Umair

I will hear my new results at 13th february. I decided to have a blood transfusion in the 4th week. Overconfident, yes. I got the same day a meeting with the doc. I will act very brave in the next two weeks to survive this survival. 

Ahmed, good luck with chelation!!!!! (ps my msn act very silly and i got "a friend" who "talks" with me (interrogate for my other ex friends) She just ask me of my dad will survive the cancer. How dumb can you be to dare to ask that? I did not tell it here the latest stories, but things dont look good. I am sorry, but I can not forgive someone when you ask that. That is why i left msn abruptly ahmed. The nxt time i will explain my disease better than writing here my frustratings.

Dore,

I hope that you are able to go 4 weeks without requiring tx.  I am also sorry to hear that your dad has been going through a tough time.  I hope that his condition improves very soon and I will keep you and your father in my prayers. 

Best,

Sharmin