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AA Aplastic anemia

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Old Wed Aug 31, 2011, 08:02 PM
mscrzy1 mscrzy1 is offline
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Hoping it's not a slippery slope..

Even bunny hills are challenging for this horrible skier. OK, that was a little corny. Ah well, gotta try to crack a joke when you can.

Anyways, for anyone who may be following or interested in any long-term experiences with ATG, I thought I would post my latest update. Remember we are all different.

This is the first year I've seen counts lower than the "normal" range for a loooong time, but I've been happy to see that they seemed to have been stabilized at anywhere around 11 for my hemoglobin, 2.3 for my WBC, and 115 for my platelets. It's been 3 months since my last check. This week, I went in for a cbc. My hemoglobin and WBC seem steady (Yay!), but my platelets have dropped to 73. More watch and wait for me. Dr. is concerned with the dip in platelets. I'm currently being tested for other autoimmune diseases to rule out any other culprits besides the scary "R" word trying to sneak in the back door. I am 15 years post-(horse) ATG with 6 months cyclosporin.
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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

Last edited by mscrzy1 : Wed Aug 31, 2011 at 08:04 PM. Reason: grammar
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Old Wed Aug 31, 2011, 11:57 PM
KimO KimO is offline
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Dear Angie,
I'm hoping along with you that this is just a bump and your platelets will rebound quickly. Be encouraged that even if you are facing a relapse your great response last time bodes well for a full recovery again. It may be even be possible to recover your counts on cyclosporine alone without repeating the ATG. After Shauna relapsed she resumed her therapeutic dose of cyclosporine and her counts were back in the normal range within a few weeks. She recently started a taper of 25 mg every three months that, if successful, will take 2 years to complete. Keep us updated, we're here for you!
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Kim, mom to Shauna, SAA 10/2007 at age 19, ATG/Cyclosporine 12/2007, end cyclo 4/2009, relapse 8/2010, and 9/2012, counts recovered on cyclo alone 300 mg/day x 2.
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Old Thu Sep 1, 2011, 12:25 AM
mscrzy1 mscrzy1 is offline
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Quote:
Originally Posted by KimO View Post
Dear Angie,
I'm hoping along with you that this is just a bump and your platelets will rebound quickly. Be encouraged that even if you are facing a relapse your great response last time bodes well for a full recovery again. It may be even be possible to recover your counts on cyclosporine alone without repeating the ATG. After Shauna relapsed she resumed her therapeutic dose of cyclosporine and her counts were back in the normal range within a few weeks. She recently started a taper of 25 mg every three months that, if successful, will take 2 years to complete. Keep us updated, we're here for you!
Thank you, Kim, for your wonderful encouragement! I'm still hopeful that it's just a crazy, whacky gliche of the system giving out random cbc counts, of course. You never give up on that idea no matter what stage of the game. But, I am grateful that if, indeed, I am seeing the "R" word trying to sneak up on me, I was able to catch it in its act early. (I've got my sword pulled, AA!! Nice try!!) And, like you said, I'm hopeful that, if needed, another round with cyclosporine (as much as I loathe the stuff) will bring my counts back to my happy normal levels again.

I wish your daughter, Shauna, many blessings in hopes that she will see success this time around!! By the way, I was 19 when I was diagnosed, too.
__________________
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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