Thank you, Marlene! The link did work. I’m glad to see someone had a positive response symptomatically. I’m currently in the phase of trying to find a provider that will prescribe it to me. So far my hematologist has just deferred me to following up with a rheumatologist for their input.
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Stevie , age 31, dx AA (3/2016) and PNH (10/2017), on eculizumab (since 12/2017) with limited improvement in sx and CBC; various non-pharmacologic modalities and healthy lifestyle habits have aided better QoL
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