Discussion Forums > Working Towards a Cure
Transfusion Independence
ironjustice:
--- Quote from: ironjustice on January 10, 2010, 05:47:30 AM ---I am wondering if anyone has followed up on the theory of iron overload PREceding the thalassemia and its' contributing to the CAUSE of thalassemia as opposed to a SECONDARY result OF the thalassemia .. ?<<
Treatment with deferiprone for iron overload alleviates bone
marrow failure in a Fanconi anemia patient.
Hemoglobin. 2009;33(5):346-51.
Chang YH, Shaw CF, Wu KH, Hsieh KH, Su YN, Lu PJ.
Department of Biological Sciences,
National Sun Yat-Sen University, Kaohsiung, Taiwan.
Abstract
Fanconi anemia (FA) is a rare inherited disorder characterized
by congenital abnormalities, progressive bone marrow failure
and cancer susceptibility.
There are no reports in the literature about a specific therapy
effective in treating the progressive bone marrow failure of FA
except for hematopoietic stem cell transplantation (HSCT).
A FA patient started to receive deferiprone (L1) therapy due to
iron overload.
We report here that the white blood cell counts, hemoglobin
(Hb) levels and platelet counts were significantly higher during
the L1-treated period than when without L1 therapy.
Therefore, L1 therapy may be worth considering for FA patients
who cannot undergo HSCT.
PMID: 19814681
------------
--- End quote ---
Andy Battaglia:
Yet deferiprone is still not approved by the FDA. Of course, Apo Pharma is nowhere the size of its giant competitor, Novartis, so one quickly understands how this can be. The FDA is a joke and is getting worse every year.
ironjustice:
The availability of L1 would be of no consequence IF one can find out WHY maltol isn't being promoted as an alternative to L1 ?
L1 / deferiprone is simply a 'ripoff' of the sugar maltol ?
Maltol is used as a template to MAKE deferiprone but I cannot find ANYTHING about the iron REMOVAL 'properties' OF maltol.
The best I've really been able to find is that maltol is SAFER than the iron chelators used now and it is used in a bubble gum to reduce smoking.
IF one WERE to find the studies which SHOW the rate of removal of iron by maltol then one can move from there since a person can get it for almost nothing out of China.
I have been down to the diabetic bakery here and they have no clue about maltol being used in foods and so I've been stymied there.
I think maltol could be used in a caramel with vegetable lecithin to make a VERY functional food for those with iron excess for sure but for a slew of other problems.
"In a structure-function investigation by Hider and co-workers , in which the yardstick of choice was radical scavenging ability, deferiprone was completely ineffective, maltol was somewhat effective, and 3,2-HOPO was the best of the representative hydroxypyrones and hydroxypyridinones examined. Desferrioxamine was by far the most effective in this regard."
Dori:
I understand it a bit more.
I think it must be more than 10 years ago since I started taking deferiprone for the first time. Then we or the pharmacy bought it from a buidling contrictive market and the pharmacy made pills of it. And it was much, much cheaper then it is today.
ironjustice:
Quote: And it was much, much cheaper then it is today
Answer: Which PROVES what we have all suspected all along. The drug makers are NOT 'in it' for US they are in it for the cash. It is evidenced in the drug thalidomide that drug that made kids to be born with flippers. It is NOW worth $4000 a month for cancer patients in Canada and the US because they 'feel like' charging that much but one can get it in Mexico and India for $12 dollars.
THAT is the why I think I cannot find the studies about maltol and how it would be effective and the same with phytic acid. Safe natural substances which won't even be looked at by the FDA for some reason. Phytic acid they refused to even consider it. Refused ? I think maltol should be pushed to the forefront due to its already PROVEN ability to remove iron IE: template FOR other iron chelators and shown to be LESS dangerous than the synthetic chelators and therefore EVEN more DESIRED by anyone with a brain. IF a doctor is shown a substance is as effective AND safer and REFUSES to use it then he shown be drawn and quartered .. imho. :wink
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