Discussion Forums > Working Towards a Cure

Transfusion Independence

<< < (4/8) > >>

Dori:

--- Quote from: ironjustice on March 06, 2010, 02:47:02 AM ---This seems to be another article about transfusion requirement going DOWN by chelation of iron.

--- End quote ---

IronJustice, be careful about what you say. Firstly, I believe you must change the title because it makes us all way too happy
Secondly, do realize that some people need more blood during their way to get deironed! These are side effects for the medications. And since most journeys to deironing take several years, you will notice that your transfusion scheme can be with longer intervals.

Although these articles are very ineresting, I do not believe in a cure for thal nor for pk def. yet. Remember that scd, but especially mds and AA are very different diseases that ours.

I know it smells like bake frogs, but that's how it is. There is indeed more happening in thal world than in mine. That's absolutely a fact, and for thal a very good one!

Dori

Andy Battaglia:
First, I just want to reply to Dore. I do believe we will see gene therapy cures for Thalassemia, Sickle Cell disease and Pyruvate kinase deficiency. I say this because each one of these has been cured in animal trials and it is only a matter of time before all of these have been trialed in humans. I realize that cures available to the public are still years away but they are coming. I also think that many of the advances in treatment may make a cure less meaningful, as the disorders will become easier to manage as new developments are introduced.

I also want to get back to the discussion about transfusion requirements at low ferritin levels. Lena has not seen any difference. Umair said he has had a longer gap between transfusions. The reason I brought this up, in addition to the material presented here by ironjustice, is that I have indeed heard that in  infants who have never been allowed to have any iron load, that less destruction of red blood cells has been observed. There is some thought that by chelating as soon as transfusions begin, that this may work towards lower blood requirements.

I realize that any evidence presented here by patients is anecdotal, but I would like to hear from more patients. Has anyone else noticed a difference in blood requirements once their iron load has dropped to the close-to-normal range? I don't think we'll hear from anyone regarding infants, as this is very new and I don't know if this is actually being tried yet, since most doctors prefer to wait until the child is older before introducing chelation drugs. It may be that the earlier chelation begins, the better off the patient will be in ways that we previously did not consider.

ironjustice:
Quote: is that I have indeed heard that in  infants who have never been allowed to have any iron load, that less destruction of red blood cells has been observed.

THAT is precisely what I am talking about. 
I didn't know that someone somewhere had actually shown evidence of that.
I've held that it is iron loading from BIRTH and the treatment 'should be' phlebotomy AT birth and a low iron intake lifetime.

Andy Battaglia:
At the very least, this has doctors and researchers questioning when chelation should start. More and more, we are seeing a trend towards earlier chelation and attempts to minimize iron loading right from the first transfusion. Can we get some research going in the area of developing early use chelators based on natural antioxidant chelators like IP6 and green tea extract? Concentrated forms of these and other natural substances may help to prevent that early iron buildup that occurs before chelation drugs are deemed safe for the age of the infant.

ironjustice:
Quote: Deemed safe for the infant.
Answer: THAT is what is happening right now in the NIH Diabetes Iron Reduction Trial.
It seems the doctors are STOPPING iron removal at a **predetermined point** .
Previous studies show by removing iron DOWN to BELOW what they 'think' is safe leads to improved recovery.
It seems they have designed the study to fail IF one takes into account previous studies.
In Jehovah Witnesses they do not recommend transfusion until the hemoglobin is 5.5.
IF that type of anemia doesn't kill the Witnesses one might not think it will kill anyone else.

Navigation

[0] Message Index

[#] Next page

[*] Previous page