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#1
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How soon for ATG to work?
My mom had ATG the last week of February. This morning she went for her routine blood work and all her counts are down accept her Platelets, they have gone up to 53 from 9 on Monday. She did have a Platelets transfusion yesterday but her counts have never gone up this high before. usually with a transfusion it would bring her Platelets up to 18-20 for about 4 days. Could the ATG being working already this soon? She is also on Cyclosporine and steroids. Her doctor actually put her Cyclosporine up to 400mg a day on Monday which I thought was strange because she was only home about a week. Is this standard? She is 117lbs. Thanks in advance!!!
WBC 2.6 Neutrophils 1.1 Hemoglobin 82 Platelets 53
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Daughter to Sharon 68 dx SAA Feb. 2010 ATG, Cyclosporine & Prednisone. |
#2
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update
I guess the doctor said that my Mom just probably got a good batch of Platelets. Has this happened to anyone else before? i was really hoping that it was a good sing. Anyways, the doctor says my Mom is doing good so far but that her counts haven't dropped down enough yet to indicate the medications are kicking in. This is a little confusing. Are they not supposed to be going up? I'm still wondering about the Cyclosporine dosage. If anyone could comment on that I would appreciate it very much. Thanks!!!
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Daughter to Sharon 68 dx SAA Feb. 2010 ATG, Cyclosporine & Prednisone. |
#3
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Hi Lamilu,
Some of the older protocols used much higher doses of Cyclosporine (12 mg/kg/day) for 6 months and then stop abruptly. Some newer protocols follow 5 mg/kg/day for longer lengths of time (years). Your mother's protocol seems like something in between. Be sure her Cyclosporine trough level is being checked frequently to ensure it isn't exceeding the maximum and that she is getting a comprehensive metabolic panel to ensure her kidneys and liver are tolerating the dosage. It will may take a few weeks for the Cyclosporine to build up to toxic levels, so check frequently. I would ask the doctor what the long term plan is for her Cyclosporine regimen. I've heard that dosages above 5 mg/kg/day provide much toxicity with little added benefit. Be proactive about checking her troughs and metabolic panels and requesting to lower the dosage if concerns arise. Stay positive!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent |
#4
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Thank you
Thank you for your reply. I called my Mom and asked her about the Trough levels and she is being monitored for the trough levels as well as the kidneys and Liver once a week. So I guess all is going as it should be. Thank you so much
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Daughter to Sharon 68 dx SAA Feb. 2010 ATG, Cyclosporine & Prednisone. |
#5
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Lamilu, I've heard other patients talk about big differences in batches of platelets. It can either be a freshness issue, or one of compatibility. Fresher is better, as platelets expire quickly. Blood type doesn't matter for Plt donations, but certain donors may be more compatible for other reasons. When Ken was getting transfused, his average Plt boost from a tx was usually up to about 45k, so 53 doesn't sound too unusual to me. Now, if it goes up from there without another transfusion, then that would be a sign.
I'm not sure what the doctor meant about her counts not having dropped enough yet. It is not uncommon for them to go down before going up, but I've never heard of any specific amount that they are supposed to go down, or of that being proof that the medications are working. I always figured you knew they were working when you start having longer intervals between needing to be transfused, and then stop needing it altogether.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine |
#6
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Thanks for your response. Yeah we are still confused about the counts needing to drop more first. He told her "things need to get worse before they will get better". Just have to wait and see I guess. I know her doctor is a Hematologist and is familiar with bone marrow diseases but no one here (Edmonton Alberta) is familiar with Aplastic Anemia. Every time my mom goes for transfusions the nurses ask her all kinds of questions about it to try and understand it more. Thanks again.
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Daughter to Sharon 68 dx SAA Feb. 2010 ATG, Cyclosporine & Prednisone. |
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