5 months after ATG and no improvement

[TonyBegg]

This from Karin (PNH since 1990, severe AA since July 2013) this morning when I suggested we seek encouragement on the Marrow Forums:

"Yes. I am taking between 375 and 400 mg of CsA, and just went up to 75 mg of eltrombopag.
Horse ATG last week of May - discharged the 1st of June.

Counts: wbc: 1.14
rbc: 3.09
hgb: 8.9
plts: 9
neut: .27
retic: .88
These are just before the last round of transfusions.
Also taking the eculizumab every two weeks since the middle of May.

Thank You. I will be interested in what you find out."

Karin is so far showing no improvement (though she seems stronger than just after the treatment) and is still transfusion dependent. We are hoping that others on the forum can say things like "it took more than 5 months for my counts to start improving but then ...". Thanks. We have a visit to the hematologist that oversaw the ATG soon and we want to be armed to fend off their suggesting a BMT if there is yet hope.

Best Wishes Tony and Karin

[ClaudiaM]

I also went through Equine ATG as of mid May this year. I am currently on Cyclo 300 mg a day maintaining a serum level between 200-400 and antiviral/biotics prophylaxis. My counts have been steady with plates running around 12 and hemo around 8..4. Hemo go up probably highest to 9.4 after transfusion then slowly fall until I need another transfusion. I am also transfusion dependent with refractory plates so I have to get HLA matched. I have improved slightly in the fact that I used to go once a week for transfusions to biweekly transfusions for RBC's. Depending on the success of my plate transfusion the week before I may get another plate transfusion if I drop below 10 the following week. Today my plates were 24, a wow! for me because either my transfusion last week was super or I am starting to respond better (too early to tell) so I won't get any plate transfusion today. I can't say my treatment has been successful, it has been life sustaining at this point. I am considering other treatment options. Promacta is too expensive, but I wonder if it is worth trying first. I hear it is successful for some so that other treatments are not necessary. I also hear cyclophosphamide may be another treatment option I am still exploring. Your thread caught my attention because it was similar to my treatment date. I wish you success. I know it's difficult to wait it out and see. My doc estimated 6 months before improvement shows. So perhaps we may see a better outcome in next month or so. Hopeful and praying.

[TonyBegg]

Hi Claudia. Thanks it is good to know that Karin is not alone. It is only because Karin qualifies for Medicaid under the new ACA that she can afford to be on Eltrombopag (I think that is the same as Promacta). I guess the thing for now is to hang in there and not make hasty decisions (or let the doctors make them for you). I will try to keep you posted with any progress from Karin so we can compare notes. Karin has been trying to keep the cyclosporin baseline serum levels up above 200 too, and when the tingling in her lips stops she looks at getting another blood test for it and upping it slightly (she had renal toxicity problems early on but that sorted out when the dose was adjusted). Changes in eltrombopag which is hard on the liver cause momentary tummy upsets until the body gets used to the higher dose. For refractory AA the dose can be taken quite high (our hematologist uses it for other thrombocytopenias). Karin was born in June 1962 so you can compare age if you want. She does seem somehow stronger since the ATG although straight after was tough. She is not on antivirals/antibiotics (because of the earlier renal toxicity - they exacerbate the cyclosporin toxicity), but has had that aspirated drug against protozoa induced pneumonia - sorry my memory..). Keeping cheerful is a big part of treatment I feel. Good luck!!