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#1
Sat Sep 12, 2009, 12:20 AM
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taper of immunosuppressants
When did people start tapering their immunosuppressive drugs post-transplant? What was the schedule they followed? I am on day 85 and my doctor has decided to start tapering my Prograf 0.5 mg every two weeks.
Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again... 
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#2
Sun Sep 13, 2009, 11:37 AM
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Hi Laura,
Just saw your question this morning. I looked back at Evan's journal and noted that we started the MMF taper on Day+126 and finished MMF altogether on Day+173. Evan did develop some patchy pink dry skin areas on his back and neck during the wean but it wasn't thought to be GVH but rather viral driven or eczema. It waxed and waned but never bothered Evan. It disappeared completely within a few months, I think.. Take care, Nicole
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Nicole, mom to Evan (20); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee. www.caringbridge.org/visit/evanmacneil
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#4
Thu Sep 17, 2009, 12:23 PM
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Tapering
I had the same question, I think you are on a lot higher dose than me. I am on 2 mg a day of prograf but also all the predisone which is down to 60 and of course the Valcyte which I just cut in half so I was hoping that my counts would come up a tad?. All of this stuff together really makes me shake. I can barely write! Oh well no biggy. I certainly do not want to regress though!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09  ________________________________________________
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#5
Thu Sep 17, 2009, 01:52 PM
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Day 71
The big consultant just told me a few minutes ago that they're going to start tapering me off the cyclosporin, hooray!!! It's about the only good news I have right now, being readmitted and looking at a possible 6-wks inside for liver infection. But I'll post that in my thread.
Anyway yeah he said they start to taper patients at around 2 mos who haven't shown any signs of gvh. I'm currently on 225mg per day and i'm looking forward to getting off cyclo entirely as it seems to be causing most of my other problems and half my meds are purely to counteract the cyclo side effects!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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#6
Thu Sep 17, 2009, 11:00 PM
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Your infection
Melissa, I am so sorry, please try to keep your spirits up!
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Vera, 56 yo female Dx RAEB II 10-08, 11-12% blasts. Normal chromosomes. Started Vidaza 10-08. . Improved Dx 3-09 MDS RA 2% blasts 8 cycles Vidaza! SCT transplant 7-1-09 at UCSF. Normal bone marrow and MDS free as of 10-09 ________________________________________________
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