Do you ever really have TOTAL REMISSION of SAA??

[Ellen McDonough]

I have a question to throw out.......

My labs are very good these days after 4 1/2 years of diagnosis of SAA. I am still taking Cyclosporin 25 mg twice a day. My hematologist suggested weaning off which I am game to do.
He says if my labs remain where they are off Cyclosporin he state I am in remission.
Current labs are WBC-3.5 neutraphyl-1.3-1.6 , Hgb-13.0, Hct-36, Platelets -140--that is the highest they have ever been. I was treated for endometritis a few days after this lab was done but my labs have been pretty stable waxing and waning a bit from here.

If so I was treated with horse ATG at diagnosis... do you ever really have a remission this far out from treatment? How is one monitored from here on? as I know I would still be at higher risk for PNH,MDS and AML?
If I am in remission when I go off Cyclosporin I wonder why I feel so fatigued still and still bruise more easily? How would one know if the aplastic anemia were to come back or if the ATG were to finally wear out?
Just wanted to ask others who might know more than my local hematologist.
Thanks,Ellen

[Hopeful]

Congratulations on your great blood counts!

I think a complete response/remission means that you have normal, stable counts and are no longer taking drugs (like cyclosporine). So, if you are able to maintain your counts after stopping cyclosporine, that would be considered a complete response/remission. The ATG has long left your system. I think it only lasts a few weeks after administration. The only thing that may still be helping you at this point would be the cyclosporine.

Because ATG is not a cure, you still have a clone of bad T-cells that is very small in size. The hope is that your marrow is healthy enough to keep them in check.

Because you will always have this clone, your doctor will still want to monitor your counts, although the spacing of this will get farther and farther out. They may monitor every other month at first and then, if things remain stable, space this out even more so.

It is hard leaving the crutch of cyclosporine behind, but if your counts have been stable at your current low dose, you may not need it at all.

Best of luck!