Hello everyone Happy Mothers Day 

 I was wondering if any one had a problem with severe anemia. about 2 years ago my physical activity went from jogging 3-4 miles per day to riding a bike then to nothing. my Hemoglobin went from 15 slowly down to 9 the hemotologist started to administer 10,000 of EPO weekly until my Hgb went to 12. I was checked for all viruses CMV, Parvo and BK all negative and all done PCR and blood 1st bone marrow test showed no signs of any cancer ar any kind of abnormal activity. Once my Hgb went to 12 they stopped for a  moth it went down to 9 started 10,000 again not working increased to 20,000 count stiil down up to 50,000 no increase. went to NYU to see a professor in hemotology 2nd bone marrow biopsy same as first. recently was admitted to NY Colombia Hospital had to get 3 units of blood went back 3 weeks later 3 more units. seems losing 1 unit of blood per week The hematologist bone marrow test number 3. results were red blood cell precursors not responding to EPO. Transplant team suggested stopping Cellcept wants to raise prograf levels to 8 I was on a steady 5-6 for 7 years post transplant 2mg twice a day now after transfusions my levels went down to 4.2 on 3mg twice a day don't make any sense My cellcept has been lowered from 500mg twice a day to 250mg twice a day. This is only a guess by the doctors because of statistics. But I hope I'm risking my organs by stopping the Cellcept can anyone let me know if they have heard of this or experienced this loss of blood. every test was done 2 and 3 times to check for internal bleeding have no answers. Just feeling horrible tired of doctors and hospitals felt great for 5 years was so lucky to get the gift of life wish I could go half way back Sorry to bother because we all have some problems and if I could help in any way feel free because I have learned so much more in the last 2 years Thanks Glenn

 

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Comment by Judith on August 17, 2012 at 7:38pm

Hi Glenn,  I was wondering how you are doing.  I too suffer with extreme Anemia.  I have also been on Cellcept and have recently been changed to Mhfortic (which is a dirivitive of Cellcept but easier on the stomach).  They have lowered it from 180 mg 3 in morning and 3 in evening to 3 & 2.  My crit is down around 8 and I alwo am taking a shot each week of Aranesp.  My doctor says my kidney isn't making the protein that makes the blood.  I am not iron defcient but am low potassium so take 3 potassium a day.  My energy level is very low.  I am 21-9 months out with my kidney and have struggled with Anemia the whole time.  I would be interested in finding out if they have found a cure for you.   Judi

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