Cyclosporine after ATG for AA PNH

[Matt R]

I am a 45-year-old male who was diagnosed with AA with PNH September 2014 after BMB from 9/14 showed 10-20% cellularity and a small PNH clone (Clones of GPI-deficient cells identified among granulocytes (16.6%), monocytes (5.9%), and RBCs (1.1%)).

Previously had BMBs in Feb. 2014 and May 2014 that just showed a slightly hypocellular marrow that was recovering from an insult. Negative for MDS on all 3 BMBs.

I have a bone marrow donor identified (perfect 14/14 male MUD with same blood type), but my doctor wanted to try ATG/Cyclosporine treatment first. I had 4 days of ATG from 2/10 - 2/13/15 and had no problems other than hives the first night. Now I'm taking 400 mg cyclosporine and 60 mg prednisone per day along with antifungal, antiviral, and antibacterial meds.

So far, I'm handling all the medications very well, with just some tingling in my lips and occasional burning sensation in my hands when going from cold to warm temperatures. ANC had been as low as 0.2 at one point in September, but have mostly hung at or above 1.0 since then.

Just prior to ATG treatment, my CBC was as follows:

WBC 3.0, LY 1.6, ANC 1.2, Plt 44, HGB 9.8, MCV 115.7, RDW 16.5%.

3 days after ATG (2/16/15), CBC was:

WBC 3.3, LY 0.4, ANC 2.6, Plt 27, HGB 9.0, MCV 115.4, RDW 15.7%.

CBC from 2/20/14 was:

WBC 4.5, LY 0.8, ANC 3.6, Plt 25, HGB 9.5, MCV 117.6, RDW 16.5%.

CBC from 2/23/15 was:

WBC 7.4, LY 0.7, ANC 6.5, Plt 38, HGB 10.6, MCV 118.1, RDW 17.6%.

CBC from 2/26/15 was

WBC 6.2, LY 2.8, ANC 2.8, Plt 48, HGB 10.3, MCV 119.

My doctor is encouraged that the platelets and hemoglobin are coming back just 14 days after ATG. And it appears the lymphocytes were knocked down as they should have been for the first 12 days after ATG (were down to 0.4), but are now coming back up to 2.8. He thinks the treatment is working as it should, but says we'll just have to monitor it closely for 6 months on cyclosporine.

I am a little concerned about the MCV and RDW getting higher with each CBC, but they have always been high since I first started having funny results -- in March of 2014 my MCV was already 107.2 and has slowly climbed in the past year. My doctor says it's probably because my marrow is fighting hard to produce blood and it's probably creating large cells to make up for the lack of cells and occasionally making some mistakes. And there may be a lot of new large reticulocytes showing up in the CBC.

3 BMBs in the past year confirmed I had no signs of MDS, but I still worry about morphing into that. But I'm encouraged with the other counts and my positive response to ATG/cyclosporine so far.

Has anyone else with AA seen similar results with ATG/cyclosporine at this point (14 days post ATG)? Is it too soon for the lymphocytes to come back to 2.8? Did your MCV level rise and then taper off?