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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Sat Nov 24, 2012, 10:47 AM
BrianFlaigmore BrianFlaigmore is offline
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Mitigating Potential Damage of Exjade

Hello,

I have recently began taking 1500mg of Exjade a day to begin chipping away at my above 6000 ferritin. I am very active and both my renal and liver functions are a worry of mine. I was wondering if anyone had any advice to minimize the damage of Exjade beyond staying hydrated. Are there foods which seem to help, or any other advice?

Thank you, Brian
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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  #2  
Old Sat Nov 24, 2012, 12:35 PM
Sally C Sally C is offline
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Hey Brian,
A good quality herbal Milk Thistle is good support for your liver which also helps with your kidneys.
I wish you well.
God Bless,
Sally
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  #3  
Old Mon Nov 26, 2012, 01:59 PM
Lulu Lulu is offline
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As well as milk thistle, You could try N-acetylcysteine (NAC). An antioxidant amino acid, it aids liver detox, and is used in orthodox medicine to treat paracetamol overdose. Check with your doc though whether there are any contraindications (eg reducing the effect of particular drugs you are taking).
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Old Mon Nov 26, 2012, 02:46 PM
BrianFlaigmore BrianFlaigmore is offline
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Thank you for the information, I will definitely look into these options!
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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  #5  
Old Wed Nov 28, 2012, 03:55 PM
cathybee1 cathybee1 is offline
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Good luck with the Exjade! I had a lot of concerns when my husband went on it, but he sailed through without any noticeable side effects. He weighs 160 lbs, started at a dose of 500mg, and gradually increased to 750mg and now 1000mg. His ferritin level is holding somewhere around 1300 now. His creatinine level is a little elevated now, so we're keeping a watch on that.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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Old Fri Nov 30, 2012, 10:34 PM
BrianFlaigmore BrianFlaigmore is offline
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Thank you! I have been started off at 1500 and I weigh about 155 right now. Does that seem high? Thanks
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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  #7  
Old Fri Nov 30, 2012, 10:40 PM
cathybee1 cathybee1 is offline
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If you notice something untoward, cut back or temporarily discontinue the Exjade and let your doctor know right away what you're experiencing. Everyone is different, after all.
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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  #8  
Old Wed Dec 5, 2012, 08:34 PM
Greg H Greg H is offline
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Hi Brian!

I've been on Exjade for almost a year now with no ill effects (aside from the outrageous cost of the drug!).

I'm 180-185 and doing 1500 mg per day. My liver and kidney numbers were initially checked every other week but are now checked monthly. They have held completely steady; no variations worth mentioning.

My ferritin has been stubborn, however, I started at 5000-plus and, a month ago, was still in the 3,000s.

I think most folks get on fine with Exjade, but a small percentage of folks do have nasty side effects, so it's important to monitor liver and kidney function while on it. I also had my vision and hearing tested before commencing. I haven't noticed any changes in that regard, but I haven't yet been for the one-year follow-up on those.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #9  
Old Thu Dec 6, 2012, 05:23 AM
Birgitta-A Birgitta-A is offline
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Danazol

Hi Greg,
Congratulations to the positive results with Danazol - I read your blogg. Very good that you participated in that trial. As far as I understand inherited MDS is not common.
Kind regards
Birgitta-A
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  #10  
Old Thu Dec 6, 2012, 06:04 AM
Greg H Greg H is offline
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Thanks, Birgitta!

There's a poster or oral presentation at ASH that describes a bit of what the folks at NIH have found by screening folks for shorter telomeres and related genetic mutations.

Screening all their bone marrow failure patients since 2003 for those issues, they found 114. I asked how many in total they had screened. I didn't get that answer, but I did get a rough ballpark guess that roughly 10% of bone marrow failure patients have telomere problems.

Flipping that around, the ASH presentation finds that the great majority of bone marrow failure patients who do have telomere problems have aplastic anemia. Only 11% had MDS.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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