[Matthew42]

Dear OP,

My mother is exactly the same age as your mother. She was diagnosed with SAA in early March of this year.

She is 7 months past horse-ATG. Her neutrophils are averaging over 1.0 (which is good), but her hemoglobin and platelets are still quite low. She requires transfusions for blood every 2-3 weeks. She still needs platelet transfusions once a week (sometimes 2). In the past two months, she's had spikes in her hemoglobin a few times (once she went from 8.6 to 10.5 without a transfusion in a few days). Her platelets only ever rose one time without a transfusion (a few weeks ago).

The hematologist said that it looks like my mother is a slow-responder and says that we have to give it more time. Sometimes once you see spikes in a slow-responder, it can take almost a year or so for the stabilization to be reached in terms of hemoglobin. And platelets are usually last level to rise (not always). The hematologist said that neutrophils staying high is a good sign, too. If horse-atg were unsuccessful, neutrophils would not be staying up, nor would there be spontaneous rises in hemoglobin without a transfusion around the six-month mark.

Your mother shouldn't take all that medicine, maybe (just my opinion). She is doing better than my mother, actually. I think you just need to give it a lot more time, and her anemia will go away. If her neutrophils are 2.4 (excellent), something is surely working. I was under the impression that if a person's neutrophils reach 1.0 and stay up around there, that is evidence the horse-ATG is working. If you look at some people who did not have a successful horse-ATG treatment, their neutrophils never really went up at all, nor did they have any real rises in hemoglobin and platelets without a transfusion by six to nine months.

My mother also has iron overload. It's been a rough road since last February. Things have gotten a little better, but she is still very much transfusion-dependent.

The other week, my mother suddenly had a big drop in hemoglobin (went from 8 to 5 in less than a week). The hematologist didn't act concerned. It's just the nature of the disease. My mother's hemoglobin almost goes up close to 11 and then down to 7 or 6 real quickly two or three weeks or two later?...real strange. The important thing is that she does get big rises without a transfusion, but her blood doesn't hold above transfusion level for more than 2-3 weeks (used to be every week she needed a RBC transfusion).

PS: I don't know if you know this (probably not), but if your mother has a small PNH clone, it is very likely she will respond to horse-ATG treatment (or rabbit). It's the greatest predictor of a response to immuno-suppressant therapy. My mother has a small PNH clone, too.

Most of what I learned about this blood disease has been on this forum. Also, every aplastic anemia is different, no matter how much they all have in common.

Also, aplastic anemia is not cancer, or pre-cancer like MDS, so it's unique. It's more like PNH in that fact that it is autoimmune in nature (for most, especially if you have a PNH clone...that is what I was told).

I don't think your doctor is an expert in any way in aplastic anemia, even if he or she is experienced treating aplastic anemics.

Things will get better.

Wishing your mother great health and happiness,

Matthew