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MDS Myelodysplastic syndromes

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Old Sun Mar 1, 2015, 05:30 PM
RichardH RichardH is offline
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MDS RARS & Arenesp

I have MDS with RARS. I have been taking Arenesp for the last 6 months and it has not responded. Anyone have experience with this?
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Old Sun Mar 1, 2015, 05:59 PM
PaulS PaulS is offline
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HI -

I did Aranesp for a couple of months without responding and then stopped. Six months seems like a long time without response - but I'm certainly no expert. I'm now trying Vidaza after counts started dropping and I started needing transfusions. Don't know yet if that's working. Are you seeing a doctor with expertise/experience with MDS? Best wishes. Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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Old Sun Mar 8, 2015, 11:41 AM
Bob Macfarlane Bob Macfarlane is offline
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Don't give up

I have been on Arensp (darbepoetin alfa) since June 6, 2006 and it has worked great for me. Not great was that date "666".

300 mcg every two weeks at this point. Has the doctor attempted to increase the dosage? I would ask before giving up on it.
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