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It's interesting your Dr wants you on exjade when your ferritin is "just" at 1000. Mine doesn't want to even think about doing anything til high 2000's. At 2,200 I decided to try adding wheatgrass (freeze dried which i believe is safer with compromised immune systems). My Dr approved this but it was my idea after doing a bit of research on it. My ferritin counts definitely came down from the wheatgrass so no drug treatment, yet. I stopped for a few weeks when I had the horse ATG (just 3 weeks ago) but just restarted it.
One nice bonus of the wheatgrass is it has a good amount of magnesium and potassium in it. Magnesium counts drop when on cyosporine so in addition to the magnesium supplement I'm now taking, my daily banana, coconut water and wheatgrass smoothie (plus different berries each day) is a great way to keep my magnesium and potassium up and reduce the leg cramps I was getting.
Best,
Sent from my mobile phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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