Chelation question

Emby,


I understand what you are talking about with the "safer method" you propose. However, what I have noticed with ferritin at the level of 45 is that even in this low range and in the course of taking ferriprox, my urine comes out with a colour and one cannot avoid to wonder:
 where does this iron come from with a level of 45?
 What I am trying to say is that our body still pours out iron- and remember my MRI is totally clear with no sign of iron whatsoever. There are probably other organs like pancreas or bones or whatever else that spill out their iron and these organs are not measured by MRI.
I believe that is why you should never stop. You should, though, rearrange the dosage in order not to have a toxic reaction in low ferritin( as was my case).

Lena

Lena,

Congratulations on your 45!!! Well done. Lowest I have managed so far is a high 95!


Emby,

I fully agree with Lena - you do not want to stop chelation ever, if you are transfusing. There are no "safe" levels of iron for a Thal major, for us to sit back and say, eh, now I shall not chelate. You just do not know which organ the iron is targeting - even with ferritin levels below 500, for all one knows the iron is going after the liver or pituitary or spleen or something else.

And, keep in mind that each 300 ml of packed RBC adds between 100-200mg of Iron to the body. So, chelation has to be adequate to ensure that this does not lead to a build up.

And, if you are well adjusted to an oral chelator, just vary the dosage - I just do not understand any doctor who would want to recommend stopping *all* chelation. I can understand the incentive with Desferal, but with oral chelators?  And, that applies to a child, as well. Iron is toxic. If your ferritin is not below 100, do not stop. And, not even then.


Cheers

Poirot

Poirot,


I couldn't have put it better! I totally agree with you. Ferritin should be kept around 100, and that's a fact.
You have also done very well, good for you!

Lena

Red blood cells are constantly being destroyed in thalassemics. The result is free iron released into the body. Even when your organs are free of iron, there is still new iron released that needs to be chelated. Anytime there is a break, there is new iron build-up that needs to be removed. I am not a fan of the chelation holiday because I have seen so many compliant patients get into trouble once they do take a holiday. A reduction in chelation may be acceptable, but stopping altogether is counter-productive. However, I do understand that the approach does need some flexibility when it comes to children whose bodies are developing, as the chelators can have some negative impact on growth, and minimizing the chelation or taking a short chelation holiday may be appropriate. Organ scans should be utilized to assure that the treatment program is on the right track.

The experience of Lena and Poirot should be studied by others. A well managed chelation program can keep thals going strong, even when only one chelator is used. Poirot, correct me if I am wrong, but I believe your success is due solely to chelation with Kelfer. Basing the chelation regimen on iron stores is the key to success.

great work!!

Dr. Vichinsky mentioned to us that if there is no free iron in the body chelators begin to chelate iron - which is necessary for the brain and other functions in the body.  I am sure that most thal majors struggle to keep iron levels down so this problem has not arisen in the past - however with new chelators thal majors are achieving levels previously unheard of in the thal major population.  Perhaps we should keep our ears open about what doctors observe about this phenomena in the future.     This applies only to the group of people who have levels below 100.  Some chelating agent to bind free iron is constantly necessary - but what that dose should be is what we need to determine.

Best of luck and keep up the great work!!

Sharmin

An example of how chelation might be altered in low iron patients is Exjade taken at 10 mg/kg daily. This is a very low maintenance level. The whole key to managing low iron levels is regular monitoring of ferritin levels, and adjusting chelation accordingly. Patients who are not closely monitored should not strive for levels as low as 100.

Who could think we would -someday- have this kind of conversation?

Things have begun to change to the better for thals, haven't they?

Andy is right about free iron circulating in the body, and this is a reason why we take  the anti-oxidants as well.
I hope the number of thals approacing the ferritin level of 100 grows on and on. We have more weapons now, you see.
It only takes our good will and devotion to achieve our goal.

Lena

9 years ago, when I became an assistant at Thalassemia Patients and Friends, I would never have expected to hear that controlling iron so well was even possible. The advancements in treatment in this short period are remarkable and a credit to all those involved in making life more livable for thals.

... and a credit to people like you, Andy, who made it a life goal to help those in need. Thank you!

Lena

Researchers and doctors have made great strides...but were it not for you we would not know what is available to us - how to utilize what is available to our advantage - lowering side effects and maximizing efficiency.  Also, many would have given up without the support and information available here.  So many people are going to live longer and healthier lives because of the information you have acquired and shared with your members.  I don't know if there are words to describe what you have accomplished.  

Our doctor told is that it blows his mind that a child has iron levels as low as little A - and far more mind blowing that he has autoimmune hemolytic anemia as well as thal major - at times he had 2 blood transfusions a week for months at a time.  During these months - he was in the hospital almost daily - and he lost a lot of normalcy in his life due to constant anemia and all of the pokes - but because of the information and support we got here we survived those years as well.  He was being treated with ritux, ivig - which were also iv infusions (and they caused headaches that made him scream so he was sedated much of the time) - I think he was in the hospital more than he was home during those times and all of the coping mechanisms he had acquired for transfusions and desferal were temporarily lost to him - maybe even to us.  Work and education -everything was a great challenge.  We've learned that if there is a physical problem you seek help for that - and when your child shuts down emotionally you seek ways to overcome that as well - helping them develop strength from the inside out.    He is once again and a healthy and happy young boy.  

Thanks to you little A is able to balance his antibody and his thalassemia - with his iron - his hockey team has made it to the finals and this afternoon he will be playing in the championship game.  

It's a silver medal for Little A this year

Way to go A! 

Thank you very much...I really appreciate from all your experiences just how much you are able to help.

Emby,

I'm glad we are all learning from each other 

Sharmin

Lena and Sharmin, you are welcome. One day 9 years ago, I read a post from an upset, frustrated young woman whose question had gone unanswered. I had two realizations that day. One was that someone needed to be answering these questions. The other was that thals and their families are kept so busy taking care of themselves and trying to stay alive that they often did not have the time or the energy to reply. I became determined to help and the rest is history.