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AA Aplastic anemia

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  #1  
Old Tue Mar 8, 2016, 02:07 PM
Ashleigh K. Ashleigh K. is offline
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Question Almost complete response to ATG very early!

Hi all,
I have recently finished my second course of ATG (finished 12th Feb 2016) and as of today (8th March 2016), my counts are almost normal!
My haemoglobin has been stable around 9.7/9.8 which isnt great, but its not terrible either. It started stabilising around a week ago I would say
My platelets have been amazing little buggers, they are currently at 235! just 2 weeks ago they crashed to 6 and i had a transfusion, perhaps the donor had some miracle platelets lol
my WBC has been between 3 and 4 and my ANC has been up and down generally jumping between 0.7/0.8 to 1.2/1.3. at the moment it is 0.8.

would you say this is a very good sign that i will have a full response? my doctor reckons so, im a bit worried about the possibility of relapse again if things move too quickly!
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Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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Old Wed Mar 9, 2016, 04:20 PM
Betty N Betty N is offline
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Did you respond quickly the first time around? I have been respond really quickly to ATG and cyclosporin and this is my first time.I was diagnosed in November 2015.
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Betty age 35 diagnosed with aplastic anemia November 2015.one round of ATG and currently on cyclosporin.
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Old Thu Mar 10, 2016, 08:18 AM
Ashleigh K. Ashleigh K. is offline
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Quote:
Originally Posted by Betty N View Post
Did you respond quickly the first time around? I have been respond really quickly to ATG and cyclosporin and this is my first time.I was diagnosed in November 2015.
No, the first time round I was transfusion dependant for 6 months before we saw improvement so I guess thats what I was expecting this time around haha
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Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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Old Thu Mar 10, 2016, 08:53 AM
TASHMAC TASHMAC is offline
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Ashleigh it is great to see how well you are responding to the horse ATG, I also responded very quickly to horse ATG and ended up with nearly normal results within 3 months of finishing the horse ATG. However I did relapse but I think with me this was because we tried to drop my dose of cyclosporine to too low a level.

Is your response to horse ATG very different to your response to rabbit?
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Old Thu Mar 10, 2016, 10:28 AM
Hopeful Hopeful is offline
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Hi Ashleigh,

Congratulations on your rapid response!

As TASHMAC suggested, be cautious about tapering your cyclosporine early (before 6 months). Your bone marrow is still very fragile, and although you may have dramatically reduced the immune attack, it still will take time for your marrow to be strong enough to fight the remaining smaller attacks on its own.

When you do start tapering, do it very slowly and get your counts checked more frequently. Halt the taper if your counts start falling.

There are many horror stories of people losing there response from tapering cyclosporine too soon or too fast.

Best of luck!
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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Old Thu Mar 10, 2016, 10:33 AM
Ashleigh K. Ashleigh K. is offline
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Originally Posted by Hopeful View Post
Hi Ashleigh,

Congratulations on your rapid response!

As TASHMAC suggested, be cautious about tapering your cyclosporine early (before 6 months). Your bone marrow is still very fragile, and although you may have dramatically reduced the immune attack, it still will take time for your marrow to be strong enough to fight the remaining smaller attacks on its own.

When you do start tapering, do it very slowly and get your counts checked more frequently. Halt the taper if your counts start falling.

There are many horror stories of people losing there response from tapering cyclosporine too soon or too fast.

Best of luck!
Thank you!
My doctor has already told me that I'll be on a steady dose for at least a year before they consider tapering I think
I'm having some trouble with ciclosporin levels at the moment but hopefully the latest one (a level of 727!) was just a mistake in the machine and I've been retested today and am being tested again on Saturday to check
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Diagnosed AA in 2009;treated rabbit ATG+Cyclosporin the same year, taken off Cyclosporin in 2011; Relapsed AA in 2015 and had horse ATG as of 08/02/16. I have copy neutral loss of heterozygosity in chromosome 6p, affecting the HLA region.
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