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thanks Claudia
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!!
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