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Old Tue Feb 23, 2016, 06:56 PM
LeAnnD LeAnnD is offline
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Join Date: Aug 2015
Location: Livingston, TN
Posts: 5
Taking Exjade with only one kidney

I hope this reaches someone. All the other posts are so old that I'm not sure if this site is reliable!

I have MDS, Less that 5% blasts, RARS. Dr says I am low risk. I get monthly PRBC. I tried Aranesp injections and they didn't work so I take no medications at this time. My last transfusion was Feb. 12, 2016.

I am currently on every 3 months visit to my hematologist and will go back on March 3rd. The last visit in November the Dr suggested the possible use of Exjade if my ferritin levels continue to rise. At that point they were at 972. I realize this is not a dangerous level but with 3 transfusions since November I expect they will continue to rise.

I am a kidney donor so I am left with only one kidney. Like others I am concerned that this drug will affect my creatinine levels and I cannot afford at this point to start having problems related to kidney damage. Has anyone else had any experience with this problem? Also like others I have heard that Wheat grass is a natural iron chelation and have been taking 1200 mg capsules of wheat grass daily for the past month and a half. I am interested in seeing if it will have affected my ferritin levels at all. If there is only a slight increase in my levels then I will know it is working a little bit.

I would really appreciate hearing from someone on this subject to see if anyone has face this particular issue. Thanks in advance!!
LeAnn Duke
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LeAnn, diagnosed MDS, refractory anemia with ringed sideroblasts, cytogentics good
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