high ferritin level

Hi Komal,

I am sorry i don't have any information about that,but i'll inquire on my next visit.

Zaini.

hi my fe is 7000 now t have started taking 1000 mg/day (kelfer) should i go for combination therapy or continue same .any suggestions

Ankita,

combination of kelfer and desferal together will be needed in your case. Only kelfer will not do the job.

Lena.

I agree with Lena. You should add desferal to your chelation program until you get your ferritin down to a safe level.

Was quite Busy with the kids and that too with samyu as she has started her schooling.She is having Asunra 300 mg/day.Her weight is 13.1kg.How much dosage of Asunra is she supposed to have for a good and effective chelation? I am from Chennai,India. Do we get FERRIPROX in India?

Kindly help me on this.

Her dose of Asunra could be 400 mg daily. In India, Kelfer is the same drug as Ferriprox.

hi all
my  ferrtin is about 50 now I dont know continue desferal (as I say I use desfonak ) as before or not I use 5 vial for 3 day per week also use 8 deferiprone each day

ZS

In your case, there are two options, either to
1- Stop chelation completly until ferritin rises again and then re-satart chelation and the benefit of this option is that you give the body a break from chelation drugs with all its side effects.

OR

2- Take only a maintaining dose and not a chelating dose to keep the same levels of ferritin.
The benefit of this option is that you don't expose your body to iron overload again and therefore keeping your organs safe and healthy.

The decision of which option to choose depends on the doctor point of view, whether the patient is a child or an adult (has to do with growth), tolerance of side effects if there are any...

But please bare in mind that doing LIC  and T2*is so important to determin the exact situation of iron overload in the body because ferritin could be deceivng as we disscussed before.
We have seen members with a ferritin in the 100s level and having iron overload in the heart, so in this case stopping chelation will not be an option.

Manal

zs,

I totally agree with Manal. I personally would choose the second option -- to continue chelating in a lower dose. I have never stopped completely chelation even when my ferritin reached 45. I think this is a mistake. It would be nice though, to have a heart and liver MRI, if this is workable in your country.

Lena

Thalpals please may I have your valuable advice?...
Regarding ferritin levels our older son, BB, is at 311 and the younger one, LB, 501.

BB is taking Ferriprox, 3 tabs 3x day for 4 days, weekly. His ferritin was much lower, 100, but has risen slowly. His T2* shows that his heart and liver are free of iron. Previously he had severe heart iron and mild liver iron. I feel that he should increase the Ferriprox by one day to stop iron building up.  Please tell me what you think about this.

LB's ferritin levels has been declining slowly and is at 511. He is taking Ferriprox 3 tabs 3x daily 7 days a week. His T2* showed him to have mild heart and liver iron but recently it shows his heart to be clear and liver with mild iron. I feel he is ok with this dose however I would still like your advice.

 ....Emby.         

thanx dear lena and manal for reply
yes I can go for MRI but I am so lazy for that I o MRI 2 year later it was nt so good t2* for my heart was about 8 and I must redo that for know how is every thing these days

You should really get another T2* to see what progress you have made on lowering your heart iron. Then you can make an informed decision about what your current chelation program should be.

Emby,

Ferriprox is doing a good job for your sons and progress is good. Watch BB's ferritin. His Ferriprox dose will probably have to be raised by one day a week as you suggested. The 300 range is very good, but if it continues upward, he will need at least one more day each week.

I think parents and patients have to closely monitor ferritin levels and chelator dosage when dealing with low ferritin levels. Those involved daily can react much more quickly to changes than doctors can. Managing the chelation regimen the way Emby's sons are managed here can ensure that enough but not too much chelation is done. When ferritin is in the range of below 300, close monitoring is required, and parents and patients need to be aware of any signs that too much chelation is being used. At these levels, only maintenance doses of chelators should be used.

With a ferritin of 102 (last count) I take 12 ferriprox seven days a week and 5 vials of desferal twice a week. With this dose I keep my ferritin around 100, though some of you would consider it too much.

Lena

Lena,

I think you are best qualified to answer this question because you have used all three chelators and have done so at low ferritin levels. Do you feel that all chelators are not the same at low ferritin levels? For example, are you more comfortable with Ferriprox than Exjade at this level? Desferal? My personal opinion, based on potential side effects, is that Ferrirpox would be the easiest to manage at very low ferritins. What do you think?