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Old Sat May 4, 2013, 11:47 PM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Hi Kevin, if you do a search under my name you may be able to find a link to the copy of the Dr Young paper which I referenced when it was published last August, I think. If you can't find it ill try to see if I have a copy and post it again.

Also recommend you try to locate a hematologist who is very experienced with AA.


I would definitely ask about the propholaxes and the GCSF shots. Your dose of the antiviral is higher than mine was post ATG (800 mg 1x day). GCSF shots for me post ATG were only if my ANC fell below 500, so as not to impact my ability to produce these on my own (tho Dr Youngs paper mentioned they will let people go down to 300 if they remain healthy). Propholaxes antibiotics post ATG were only when my ANC fell below 500 because with me, my white cell/neutrophil production was negatively impacted with some antibiotics. Also, some Docs believe being on them too long may make them less effective when needed. I was also NOT on any antifungals post ATG as they have also been known to negatively impact white cell/neutrophil production in some AA patients.

The GCSF is also known to take energy away from platelet production . So whenever I had GCSF my platelet count would fall. It's all a very delicate balance for SAA patients which is why having a hematologist with many years of AA experience is so helpful.

Good luck!!
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great

Last edited by dfantle : Sun May 5, 2013 at 12:02 AM.
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