Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Both of my boys have neutropenia (due to having Shwachman-Diamond Syndrome) and my youngest has used Neupogen (G-CSF) and GM-CSF before. We do not use it on a regular schedule— we use it as needed, before surgeries, etc….. to boost their WBC. If you go to the Amgen website, you can view a PDF of the physician’s insert. We live in North Carolina, but are followed by the Bone Marrow Failure clinic at CCHMC in Cincinnati & also see immunology there. We’ll be up there in February for the boys BMBs and follow-up appointments. Peace be with you, Pattie God does not intervene to change the circumstances of our life; what He does do, with the most compassionate faithfulness, is enable us to make those circumstances fruitful. Death remains death, but it is also a new life: pain accepted from His hands purifies, transforms, redeems. God is what happens to us; His presence makes everything potential for growth in love and goodness. Yes, let Him make us Holy. ~Sister Beckett _____ From: [mailto: ] On Behalf Of Sent: Sunday, January 06, 2008 6:05 PM Subject: Neupogen Does anyone here have any experience with neupogen therapy? It has been recommended by several doctors to start Meredith and will be discussing it in Cincinnati this week. I'd like a real-life experience instead of just the drug info. Thanks! Mom to , 5 GSD and PIDD Meredith, 3 GSD and PIDD and , 8 healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 Thanks Pattie! I had read the info on the Amgen website but was wanting personal experiences, too. Thanks for yours. How do you determine if your boys need it? Neutropenia is common in one form of GSD and those patients use it daily for the rest of their lives once they reach the point of needing to start. I had understood that this would most likely be the case with Meredith (and possibly ) so I’m curious about using it temporarily. Also, does taking GCSF raise WBC in addition to the ANC? WBC are also low in them and didn’t realize that would improve with neupogen but I guess since neutrophils are white cells, that makes sense. I just hadn’t put that together. Mom to , 5 GSD, PIDD Meredith, 2 GSD, PIDD , 8 healthy Huntsville, AL www.caringbridge.com/visit/mhobbs _____ From: [mailto: ] On Behalf Of Pattie Curran Sent: Sunday, January 06, 2008 5:40 PM Subject: RE: Neupogen Both of my boys have neutropenia (due to having Shwachman-Diamond Syndrome) and my youngest has used Neupogen (G-CSF) and GM-CSF before. We do not use it on a regular schedule— we use it as needed, before surgeries, etc….. to boost their WBC. If you go to the Amgen website, you can view a PDF of the physician’s insert. We live in North Carolina, but are followed by the Bone Marrow Failure clinic at CCHMC in Cincinnati & also see immunology there. We’ll be up there in February for the boys BMBs and follow-up appointments. Peace be with you, Pattie God does not intervene to change the circumstances of our life; what He does do, with the most compassionate faithfulness, is enable us to make those circumstances fruitful. Death remains death, but it is also a new life: pain accepted from His hands purifies, transforms, redeems. God is what happens to us; His presence makes everything potential for growth in love and goodness. Yes, let Him make us Holy. ~Sister Beckett _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Sent: Sunday, January 06, 2008 6:05 PM groups (DOT) <mailto:%40> com Subject: Neupogen Does anyone here have any experience with neupogen therapy? It has been recommended by several doctors to start Meredith and will be discussing it in Cincinnati this week. I'd like a real-life experience instead of just the drug info. Thanks! Mom to , 5 GSD and PIDD Meredith, 3 GSD and PIDD and , 8 healthy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2008 Report Share Posted September 17, 2008 Hi gang, I am half way through treatment. I feel run down at times. The doc just put me on a new med shot two times per week, neupogen. it is to help make more white blood cells. Has anyone taken this med? They gave me one shot yesterday and i don't feel much better. I guess it take a little while before it works. Hope every one is doing well in tx, and all other stages. Hoku Quote Link to comment Share on other sites More sharing options...
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