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AA Aplastic anemia

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Old Tue May 31, 2011, 01:00 PM
JudyS57 JudyS57 is offline
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Has anyone relpased after 5yrs in remission?

I used to frequent the AA-MDS list alot when diagnoised with SAA in 1999. But haven't dropped in for a long time. I have been very well for some years now, having been in complete remission for over 5years. Iron overload, from all the transfusions, was a problem for a long time but even that is good now. Icredit my remission to great medical management in New Zealand and taking up regular exercise and lowering stress levels. AA no longer features in my life apart from annual visit to Heam Doctor. Two years ago, confident of good health we moved to Qatar..... and in recent months my energy levels are flagging, and I just don't feel so well anymore. My Hb has dropped just below normal range for first time in 5 years, and my thyroid function is borderline low.My other counts have always hovered in the low end of normal range. I am worried. It may be a just a blip, but I would be grateful to know of anyone who has relapsed after so long. My Heam Doctor in new Zealand said that such a long enduring remission is an excellent sign. I am going back to new Zealand to see him next month. I would appreciate any comments or feedback. Is there anyone else on this forum who lives in the Middle East? Thankyou
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Judy, SAA 1999. ATG & cyclosporin. Remission since 2005.
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Old Tue May 31, 2011, 08:35 PM
mscrzy1 mscrzy1 is offline
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I can relate to your story. I've maintained low normal counts for about 13 years. This year, my counts have all dropped below normal. It started with my WBC and my platelets and hemoglobin weren't too far behind. Drs. aren't sure what we're seeing happening. We're simply in a wait and see game with my body. I'm hoping to see my counts rebound. I think that they are still good enough, we can see that happen on their own.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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Old Wed Jun 1, 2011, 06:18 AM
squirrellypoo squirrellypoo is offline
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My counts were stable and I lived a perfectly normal life for 25 years after my ATG treatment, since the doctors back in the 80s said I was cured. But now the researchers say that ATG usually only works for 5, 10, or 15 years max, though some people can quite happily repeat the process as needed.
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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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Old Sat Jun 18, 2011, 04:03 AM
Laura Laura is offline
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I had been in remission about five or so years and living a completely normal life and then my counts dropped. Not to worry u...but the good thing is that it is just low end normal and counts can fluctuate. So here is hope.g that is all it is. 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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Old Sat Jun 18, 2011, 11:33 AM
Ryan Jay Ryan Jay is offline
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Hmmmm...

According to Dr. Scheinberg at NIH. And I am paraphrasing from one of his webinars...

Once someone responds to ATG, they have about a 50% chance of never having to deal with the disease again. Sure, maybe some tweaking here and there with the cyclosporine, but nothing major. This is what the long term data at the NIH point to. Others have relapses and clonal evolution.

Also, AA survivors do not have the reserves that normal patients do...therefore you can get some big swings in your counts compared to "normal" people.
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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Old Sat Jun 18, 2011, 12:29 PM
JudyS57 JudyS57 is offline
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Thanks

Thank you for your comments. They are helpful. I go back to New Zealand next week for 2 weeks, and will have a blood test as soon as I land. I hope that 28hrs of flights does not affect blood results. Fingers crossed that it was just a blip and all is back to normal.
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