Iron Chelation and Ferritin. What Should Be the Target?

We have had this question posed and Lena had asked us to find out at the NYC conference. As it turned out, we didn't need to ask. Instead, we witnessed the doctors asking this very question. Previously, we had been told ferritin should be under 1000. Then with Exjade, it was recommended to stop chelation once the ferritin dropped below 500. Now the doctors are posing this question: Should we aim for as close to normal iron stores as possible? Lena's doctor has taken the lead with this, and has the aim of a ferritin level of 100, which is a great target. The more doctors learn, the more they understand that we should aim for as close to normal as possible. Of course, this requires close monitoring to make sure iron stores are not completely depleted, but the goal of normal sounds pretty good.

Comments and words of experience are welcome.

I believe that the decesion should be based on the iron overload in organs rather than the ferritin levels. I remember one of our members here has a ferritin level around 147 but has iron overload in  the heart. So in this case the ferritin levels will be misleading and depending on them in this case can lead to organ failure.

I guess T2*  and ferriscan should be the basis of dosing the chelators.

manal

Yes, the annual scans should be used for determining organ iron load, but for the purposes of regular monitoring in a closely managed program, ferritin tests must be used. I think we should stress that these low ferritin levels should not be attempted along with chelation, unless close monitoring is taking place.

Your right Andy,

It is when very little free iron is available to bind with that chelators can cause more side effects.  I think that this is especially the case with desferal.  Desferal should not be used when liver iron levels are below 1000.  That is why chelators such as exjade and L1 can change the way we use chelation as they "appear" to be safe when iron levels are much lower - maybe even below 100.  But as you said, close monitoring is necessary when maintaining ferritin levels that low.  Ophthalmology and audiology tests should be done more frequently, blood tests should be done every 3 weeks.

Sharmin

In our Thalassemia Unit doctors and patients target at ferritin level around 100. The old goal of 1000 or 500 that you referred to, Andy, is past history now. Things have changed and ferritin next to normal should be aimed at. In my opinion, when one's ferritin is at this low level, it is rare that one has high organ iron. There are some cases, yes, but from what I have seen very rare. The only thing to be considered at such low ferritin level is the side effects when chelators chelate clean organs. This is something for the doctors to resolve by adjusting the chelating dosage. I have personally faced that with desferal--my heart is clean from iron and desferal in  high dosage makes me have heart pulpitations. From 70-80 when not in desferal, they raise to 90-95 when having desferal. O.K, nothing so much,but when I had a higher desferal dosage of 8-10 vials per time they reached 120 at times. So I have adjusted the dosage to 5 vials each time and this dosage is really the upper limit for me. Above that, my heart reacts.( I am thinking of changing that in the future with ferriprox-exjade combination therapy. We'll see. )
So this is really something to be taken into consideration now by the doctors.

Lena.

Lena,

You are taking ferriprox too right?

And i think we have yet to see some one with Lena's ferrtin levels doing chjelation with Exjade,am i right? Or have you guys met some one with that kind of levels who is on exjade?

Zaini.

Yes Zaini,

I am on ferriprox-desferal combination therapy and will possibly turn into ferriprox-exjade sometime during next year.

Lena.

I think this level 100 is possible when in the country there are all possible chelators, and they are given on time.
Here in Bulgaria we have DFO for free, Ferriprox we have to buy, Exjade was given about an year for some of the patient.
When all these chelators are free for the patients i think this level is possible.

Tedi is right. It also depence of patients has full access to chelation medication. I personally sometimes wonder why Unicef hasnt make a target for thalassemia. We do hear lots about malaria, but why not about the disease that prevent people for malaria?
If my insurance wouldnt pay those meds I wont be typing this here now.
All those patients organisation should get more help from outside this thal world.

Tedi is right. It also depence of patients has full access to chelation medication. I personally sometimes wonder why Unicef hasnt make a target for thalassemia. We do hear lots about malaria, but why not about the disease that prevent people for malaria?
If my insurance wouldnt pay those meds I wont be typing this here now.
All those patients organisation should get more help from outside this thal world.

It is ridiculous that we can't get med's because our insurance won't pay for it, I waited 3yrs to get the Exjade and went through alot to get it. Malaria is what caused Thalassemia so yeah they should pay for Med's that are needed to live..

You had to wait 3yr to get Exjade!  I am so sorry for you!
Idiots!

Dear, we here in Bulgaria have some private criteria of getting ferriprox /from 2010/ and Exjade.
Noone knows these criteria.
Because of that me and my bother /who is thal major,too/ buy ferripfor for 550euro. 

Dear, we here in Bulgaria have some private criteria of getting ferriprox /from 2010/ and Exjade.
Noone knows these criteria.
Because of that me and my bother /who is thal major,too/ buy ferripfor for 550euro. 

 
Idiots! I am so angry to read things like that. It would never happend that it are the children of high bosses who must deal with this problem, huh?!

On an other note: do you see chance to come to Berlin?

If you need any help by sending letters to your government; I am here to send them out for our friends in Bulgaria, or any country in the world. Sendings letters definitely helps.

Say hi to your brother from me. I am serious about that letter idea. I think we should flood them with letters. Its better to flood them with letters than with this angry red devil figures.