Help With Chelation At Lower Ferritin Level For Intermedia And Spleen Size

 Dear Thalpals ,

  I'm E beta intermedia. My Ist transfusion was at the age of 11 years now I'm 24.  I am not testing Serum Ferritin for long periods as I was transfusion less for many years. After taking total 17 unit blood (last 10 units are from Nov 14 to July 15) when I tested ferritin at 07.08.15 it was then very high (3700). Then Starting defrijet(defarasirox) 1000mg/day.

After 4 months at 09.12.15 SF decreases to 896 . Then I was stop chelation after continuing 4 days as doctors are stop chelation when it reaches below 1000. I have checked again my Serum Ferritin levels few days ago. It remains at 850 at 02.03.16.


There may be some risks to continue chelation at lower ferritin level. I want to know what is the tricks of chelation by avoiding risks ?
Please advice me to reach at least 500.


I can't understand one thing that my spleen size is also increases to 6 cm after stoping the chelator in last 2.5 months. Even at high SF level it was lower than now. If it increases due to low Hb level but in my case when I was at Hb 3-4 one year ago at that time spleen was normal. Even few months ago ( Aug 15 - Dec 15 ) when Hb remains 6.5-7.0 then spleen was also lower than now. But now I have Hb level 7.5-8.0 for last 2.5 months but spleen increases to 6 cm although Hb increases.
Is there any conection between these  ?
I can't understand.
Please reply. .

Sorry for long post with excess amount of information.

It would be better to reduce your chelation to a maintenance dose when your Hb drops below 500. Don't stop at 1000. You need to be cleaning up the new free iron, which is very easy to do at low ferritin levels, as long as you continue to chelate. Without a chelator present, this free iron can cause damage, including to the red blood cells, causing a faster breakdown. This may be why you see an increase in spleen size when you don't chelate.

 Thank you Sir for replying.

I am confused about the doses. I need proper guidance in this issue. I am not experience in dealing with chelation as it is my first time chelation.

Please suggest a suitable dose.  My previous dose was 1000mg / day.

When your ferritin drops below 500, you can cut the dose to 1/2 to 2/3 dose. If it gets below 300, take no more than half a dose. It's best to take a smaller dose daily than a full dose every other day, as it will keep a steady supply of chelator available to soak up the iron released by the breakdown of red blood cells.

Thank you So much Sir. It's a lot for me.

Please tell me Serum Ferritin should be tested how much time duration for observing the parameter while chelating  ?

It's best to take a smaller dose daily than a full dose every other day, as it will keep a steady supply of chelator available to soak up the iron released by the breakdown of red blood cells.

It's a great information. Also confused about this earlier.

I think when your ferritin is low, you should get checked once monthly to make sure it doesn't get too low or start rising.

Dear Abyayajyoti,

For your questions about chelation Andy has given all the answers but re-start the chelation only if you are not going to start therapy of Dr Ramanan.

For your Spleen size,
The USG abdomen do not shows the exact size because of limitation of technology. When my spleen was removed the size in USG was 17.5 cm and the actual was 19cm+

Moreover,
in intermediate patient even if they do not transfuse the iron always gets absorbed from guts so S.ferritin needs to checked regularly.

Thank you for replying.

I meet with Dr Ramanan Sir few days ago.
He suggest me for planning ideally spleenactomy . Although there is controversy about it. I don't know which is right.

According to him , There is possibility of excretion of protein in urine while chelating under 1000. He also say that SF will decreases gradually when I am starting to produce my own hemoglobin .

He also creates new hope for me as he tell me that if my HB exceed than 12 then I should stop medicines for 1 week because it causes headache for some patients in Hb 14-15.

  Dear Friends ,
anyone of you faces any problem while chelating under 1000.
If anyone has any experience  , please reply. .

But don't know why after stoping the chelator I feels bad in health condition from last two months.

what bad conditions?

Thank you Dharmeshji for quering .

Mainly there was increase in spleen size from January  ( after 1 month from stop chelation )

Shortness of breath like forget to breath. Some uneasiness in breathing. Is it related with digestion  ?

Chelator also decreases my apetite and digestion power. Before starting chelator it was very good. 

My health was also break down, looses 6 kg weight in last year which don't seems to be stabilised.

During the journey to pune there was 2 days nose bleeding and some weight loss. I can't tolerate the hot and dry weather there.

Now after starting his therapy which increases my heartbeat and slightly pain and weakness in muscles.
I think a new medicine takes time to be adjusted in the body. It may be due to that.