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BrianFlaigmore
Sat Nov 24, 2012, 11:47 AM
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

Sally C
Sat Nov 24, 2012, 01:35 PM
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

Lulu
Mon Nov 26, 2012, 02:59 PM
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).

BrianFlaigmore
Mon Nov 26, 2012, 03:46 PM
Thank you for the information, I will definitely look into these options!

cathybee1
Wed Nov 28, 2012, 04:55 PM
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.

BrianFlaigmore
Fri Nov 30, 2012, 11:34 PM
Thank you! I have been started off at 1500 and I weigh about 155 right now. Does that seem high? Thanks

cathybee1
Fri Nov 30, 2012, 11:40 PM
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. :)

Greg H
Wed Dec 5, 2012, 09:34 PM
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

Birgitta-A
Thu Dec 6, 2012, 06:23 AM
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

Greg H
Thu Dec 6, 2012, 07:04 AM
Thanks, Birgitta!

There's a poster or oral presentation at ASH (https://ash.confex.com/ash/2012/webprogram/Paper55024.html)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