Hi Heather.
I hope your husband is tolerating Soliris well, without side effects (headaches are common). Be sure to tell the doctor immediately if Ronald has a fever.
Since you're in Houston you might contact
Dr. Lawrence Rice at the
Methodist Hospital. He's very experienced with PNH.
Has the treatment reduced Ronald's PNH symptoms? Do you know if he has aplastic anemia too? That may be the case if his initial symptoms included low platelets and a low white count. Soliris doesn't help bring up a low white count so you might ask his hematologist about drugs called G-CSF (granulocyte colony-stimulating factor) or GM-CSF (granulocyte macrophage colony-stimulating factor). Platelets can be transfused. Avoid aspirin, since it interferes with platelets.
To find other PNH patients and caregivers I suggest that you join the
PNH Support Group.