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Old Fri Jan 20, 2012, 09:27 AM
amberb amberb is offline
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Join Date: Aug 2011
Location: Jacksonville Beach, FL
Posts: 21
Hi! I know you've gotten a lot of responses to this post, but this has been my experience... I had Horse ATG in July 2011 along with Cyclosporine. It really wears you out, I had absolutely no energy and it causes your WBC and ANC to drop. Because of the drop in the neutraphils I was on antibiotics, anti virals, and anti fungals as a precaution so I wouldn't catch any other airborne illnesses. Along with all the prophalactics, I had to follow neutropenic precautions which includes a special diet in which you can't have any fresh fruits or vegetables, under cooked meats, certain cheeses, and anything that isn't pasturized. I also stayed away from public or crowded places, if I did have to go to the store I would wear a mask. I also kept things very clean. I can't tell you how many bottles of Lysol spray and hand sanitizer I've gone through.
With the ATG there is the three to six month waiting period to see if it is working. By the third month my numbers had crept up enough to where I could come off the antibiotics, but still continue the diet and other precautions. I waited a full five months to decide that I wanted to repeat the ATG (all this time not working and got approved for disability). My bone marrow had gone from less than 20% cellularity to 80%, but it wasn't showing in my blood work. I had rabbit ATG on Jan 10th. So far I have shown an initial response, but they don't know if it is due to the ATG or the cortisone they give in conjunction with it. I am still on Cyclosporine. If the AA goes into remission they wait, I believe, at least 90 days to start tapering off the Cyclosporine.
I hope this can help some in making this difficult decision. It's rough. I had extreme fatigue, nausea, and vomiting for almost three months before starting to feel better, but it does get better. The first thing I did when they told me I could stop the neutropenic diet was go out and have a salad and a rare steak. My Drs have told me stories of patients who don't follow the diet carefully and eat out and end up getting a virus on top of everything and it really sets them back in their treatment. So my one bit of advice would be, if you go with the ATG, to be diligent about the precautions and resist the temptations of going out.
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Amber, age 24, diagnosed w/ SAA and treated w/ horse ATG 7/11, rabbit ATG 1/12, on cyclosporine. Started Desferal infusion for iron overload 7/12.
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