I've had 4 infusions of Hizentra but no where can I find how often blood should be tested to monitor how it's working. Any feedback appreciated. MY doctor is over 2 hours away & his nurses won't ask him this question!!! I see him in 3 weeks but am going to Cleveland Clinic because I have immunodeficiency, Addison's ( adrenal insufficiency ) , chronic migraines
( have used BOTOX for years, but lately headaches still persist if not worse! ), posterior vitreous detachment, mild cervical dystonia PLUS was diagnosed with CASTLEMAN's in 2007 BEFORE there was even a medical code! UCLA diagnosed me with Non-Hodgekins Lymphona for 6 months before a research dr in Arizona, Dr. Guido Tricot, got my slides & informed me I had Castlemans.
MY doctors ( Endocronolgist, immunologist, neurologist, neuro ophthalmologist, etc) all are located in different cities, as we live about an hour from New Orleans, and NONE can agree or will work together, therefore, the trip to CLEVELAND CLINIC.
Thanks you for any feedback or insight!