High retic but low hgb - question as to why?

[TASHMAC]

My retic is pumping at about 10% but my hgb is falling and doctors seem completely baffled.

LDH is normal and bilirubin is only slightly elevated.

Creatinine levels are elevated.

Doctors are thinking it could AIHA.

Has anyone else suffered from this?

[curlygirl]

AIHA is a possibility. Also, I can't remember if you posted your hemoglobin before your 2nd ATG. If you were receiving transfusions your bone marrow may only be making enough blood cells for a hemoglobin count of 4 or 5 and you wouldn't know it. Even at 10% retics it may take awhile for it to start rising above transfusion range at hemoglobin of 7 or 8 (depending at what level your doctors transfuse.)

[Marlene]

Good point regarding the retic %. You need to look at the absolute retic count to get a better handle on how many new red cells there are. It also needs to be adjusted to take the anemia into consideration.

[evansmom]

I would think your LDH would be very elevated if it were AIHA. My son had hemolysis from mechanical injury to his red blood cells post BMT as a result of microangiopathy (tiny blood vessel damage), This was from a rare and potentially life threatening reaction to tacrolimus. His hgb kept dropping rapidly, his urine was tea coloured, his LDH was very high, bili somewhat elevated and haptoglobin was nearly 0. Additionally, there were many red cell fragments (schistocytes) in his blood smear. His retics were high also.

Could you be experiencing the beginnings of a similar reaction to either cyclosporin or tacrolimus? It's rare and almost always misdiagnosed initially but it does happen.

[TASHMAC]

Thanks for the replies. My LDH is elevated by only mildly elevated. My bilirubin seems to be in the normal range.

Post receiving the ATG I was in need of transfusions but have been RBC transfusion free since mid June.

My retic count seems to move around a bit - my hgb is now in the mid 8's and my retic count is in the 4s. I am nervous as it was in the 8s but has fallen.

My platelets that were also in the high 70s are now in the low 50s.

My PNH clone has increased a bit in size it is now about 9%.

Doctors seem completely confused as to why my counts are where they are. There has been some discussion about whether the issue is the cyclosporine and perhaps changing to prograft.

I had a bone marrow biopsy and aspiration about 2 weeks ago and unfortunately the sample was not good enough to confirm cellularity but they believe it to be 10 to 40%.

The interesting thing is that post horse ATG I also had issues with hemolysis and my HGB but it did not last that long. So I keep wondering whether given I had rabbit this time whether the hemolysis is just going to last a bit longer but it is un-nerving that my platelets are also not improving.

My lymphs are also still virtually non-existent.

[curlygirl]

I can't remember where I read this originally, but I remember reading that rabbit ALG suppresses lymphs for far longer than horse ATG. You may have to google that using the terms "rabbit ALG," "horse ATG", & "Aplastic Anemia" all together. That may also be the issue with the hemolysis lasting longer, but I don't know. My son had massive problems immediately post horse ATG with hemolysis but not before and after. It may be a combination of the ATG or ALG and PNH clone together. My son's PNH clone at diagnosis was rather large, at 19%.

[TASHMAC]

Curlygirl, very interesting that your son also suffered hemolysis post the horse ATG. I suffered hemolysis post the ATG the first time but it resolved itself reasonably quickly so I am hoping that this hemolysis is just lasting longer because it is rabbit this time.

I think the doctors are not convinced that the ATG/ALG can cause hemolysis but I feel that it definitely does.

My results today are HGB 8.3, Plts 61, retic 5.5 absolute retic 0.1122, WBC 3.2, LDH 191 (normal) and bilirubin 1.3 so it makes very little sense as to why my HGB is still so low as my blood has been staying like this for about a month now so you would think with a reasonably high retic count and no huge sign of hemolysis that HGB would be improving .....

[lfeinsmith]

Originally Posted by TASHMAC

My retic is pumping at about 10% but my hgb is falling and doctors seem completely baffled.

LDH is normal and bilirubin is only slightly elevated.

Creatinine levels are elevated.

Doctors are thinking it could AIHA.

Has anyone else suffered from this?

try ivig + oral steroids

[TASHMAC]

Thanks Leslie, your thoughts are much appreciated, I am currently taking prednisone and have been considering IVIG.