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  #1  
Old Sun Jun 12, 2011, 08:11 AM
celebrations celebrations is offline
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high liver counts after years of MDS?

Hi,
after 5,5 years of MDS my liver counts are elevated (not yet that much but elevated) and so is my glucosis count (is that the right word for it? When it will be to high you'll have diabetis).
I get red blood transfusions all 14 - 18 days (about 105 are done), no further medication, ferritin level around 1000, will restart Exjade.
It can not be from the Exjade because I have paused fpr 8 months.

ANY IDEAS ? ANY EXPERIENCE?

I am concerned. I cannot afford any organ damage, because somewhere in the future I will have to have a SCT.

Bergit
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  #2  
Old Sun Jun 12, 2011, 02:17 PM
Birgitta-A Birgitta-A is offline
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Iron overload

Hi Bergit,
You probably already know than iron overload can damage the liver and this can be followed by controlling the liver tests - ASAT and ALAT (I don't know what these tests are called in the US). In fact increased liver tests is one reason to start iron chelating in many countries. You know we manage well with one third of the liver, so it is OK if the tests are elevated during some months.

Iron overload can damage the pancreas too so we get less insulin and increased blood suger.

Remember that it takes years for serious symptoms to develope.

"In the liver, which is the main repository of iron in patients with transfusional iron overload, serious clinical consequences can arise, such as increased liver tests... Iron overload also can cause progressive dysfunction of the endocrine glands, leading to diabetes..."

http://onlinelibrary.wiley.com/doi/1...ncr.23280/full
Kind regards
Birgitta-A
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  #3  
Old Mon Jun 13, 2011, 12:55 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Birgitta-A View Post
Hi Bergit,
You probably already know than iron overload can damage the liver and this can be followed by controlling the liver tests - ASAT and ALAT (I don't know what these tests are called in the US)
In the U.S. they are called AST and ALT. These are tests for liver enzymes in the blood, which go up in response to liver problems.

AST stands for aspartate aminotransferase and ALT stands for alanine aminotransferase so you can see why people always use the abbreviations! ASAT and ALAT are more sensible abbreviations, but in any case they mean the same thing.
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  #4  
Old Mon Jun 13, 2011, 07:38 AM
Chirley Chirley is offline
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Hi Birgitta, Interesting what you said about the pancreas, I didn't know it could be affected by iron overload. It makes me wonder if the raised amylase/lipase I had with my Exjade reaction was actually from the Exjade. It is the only time I have ever had those enzymes tested. I would have thought they would have redone them when I stopped the Exjade but they haven't.

I might ask for them to be done with my weekly copper tomorrow. Thanks again for the information.

Regards
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  #5  
Old Mon Jun 13, 2011, 01:42 PM
Birgitta-A Birgitta-A is offline
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Iron overload

Hi Chirley,
Here is info about iron overload - I hope it isn't an advertisment:
http://www.betransfusionsmart.com/pa...n_overload.jsp
Kind regards
Birgitta-A
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  #6  
Old Tue Jun 14, 2011, 09:04 AM
celebrations celebrations is offline
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Thank you Birgitta and Neil for your informations and care !
AST and ALAT = yes, same abbreviations in Germany (it's latin I suppose).
Of course I know that iron overload bothers your vital organs.
But am not yet that overloaded ? ca. 1000 ferritin.
Also I am asking myself - or do you know ? - do high counts (liver and glucose) decline when chelating?
Many greetings and good wishes,
Bergit
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  #7  
Old Tue Jun 14, 2011, 09:09 AM
celebrations celebrations is offline
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Hi Birgitta,
it's me again.
I just read the pdf "iron overload" you recommended.
It's from Novartis. Novartis sells Exjade.
:Smile:
Bergit
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  #8  
Old Wed Jun 15, 2011, 07:10 AM
Birgitta-A Birgitta-A is offline
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Chelating

Hi Bergit,
You know if your high liver and glucose test results depend on the iron overload they can decrease when you are chelated. Some people have a very sensitive liver and it will react early even if the ferritin level only is 1000 - maybe it is the same with pancreas.

Yes, I saw that the info about iron overload was from Novartis - then I thought that Neil perhaps would take it away because it was considered as advertisment.
Kind regards
Birgitta-A
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  #9  
Old Wed Jun 15, 2011, 03:03 PM
Neil Cuadra Neil Cuadra is offline
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BeTransfusionSmart.com is OK

You are right that it's smart to consider the messenger, not just the message. We do weed out advertising at Marrowforums but BeTransfusionSmart.com (alias AskAboutIron.com) is a website that can help patients without giving them a hard sell. It's written in layperson's terms, which gives it an advantage over many medical sites you'll find. Overall, I think the tradeoff is worth it. Novartis also runs Exjade.com.

A number of the pharmaceutical companies run websites with disease and drug descriptions. Although the companies have a vested interest in promoting their products and these sites tend to give short shrift to the "watch and wait" approach in favor of treatment, I've found that they present accurate information about AA, MDS, and PNH, and they spend enough money to make good use of slideshows, diagrams, charts, animations, and other information that can help explain the diseases and their treatment in a way most of us can follow.

Other examples: Soliris.net is run by Alexion. Revlimid.com and Vidaza.com are run by Celgene. They are up front about it, putting their names and logos there so you know who the source of the information is. In contrast, it's not clear at first glance who runs PNHSource.com, but that too is Alexion.
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