What makes you think you won't tolerate any infusions because you did not tolerate Hizentra? People are very unique - and often when one brand doesn't work - another one will. My son had aspeptic meningitis from one brand, but has not had a single reaction on another brand (for 5+years). I've heard Reidl speak - but have not seen him personally, but I know others who have and they all LOVE him. There is a doc in Ohio who deals a lot with patients with issues dealing with GG infusions (in particular patients who can't tolerate any brands) - I'd be willing to bet IDF could put you in contact. I know a patient who saw him and he's done wonders for her. At Stanford - I'd know Dr. McGhee is up there - and treats children and adults. I really like him. As for experts in CVID - I'd say Cunningham - Rundles - but she is in NY and I'm not sure how necessary that is as a first step. The IDF can also connect you with doctors - and can tell you about upcoming educational events (there is one in December in CA).
Please don't feel like you are at the end of your rope because you can't tolerate one brand - often another brand will work for you. There are 3 brands FDA approved for SubQ - what wasn't work for one will often work for another. Are you on Facebook? There are MANY groups for CVID/PIDD patients.
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What makes you think you won't tolerate any infusions because you did not tolerate Hizentra? People are very unique - and often when one brand doesn't work - another one will. My son had aspeptic meningitis from one brand, but has not had a single reaction on another brand (for 5+years). I've heard Reidl speak - but have not seen him personally, but I know others who have and they all LOVE him. There is a doc in Ohio who deals a lot with patients with issues dealing with GG infusions (in particular patients who can't tolerate any brands) - I'd be willing to bet IDF could put you in contact. I know a patient who saw him and he's done wonders for her. At Stanford - I'd know Dr. McGhee is up there - and treats children and adults. I really like him. As for experts in CVID - I'd say Cunningham - Rundles - but she is in NY and I'm not sure how necessary that is as a first step. The IDF can also connect you with doctors - and can tell you about upcoming educational events (there is one in December in CA).
Please don't feel like you are at the end of your rope because you can't tolerate one brand - often another brand will work for you. There are 3 brands FDA approved for SubQ - what wasn't work for one will often work for another. Are you on Facebook? There are MANY groups for CVID/PIDD patients.
October 28, 2011 - 8:02pmThis Comment
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