[CIS PIDD] [cis-pidd] IVIG/ScIg for Complement deficiency?

Tue Apr 14 11:26:52 EDT 2015

Thank you Nacho. The cite was great.   I went and read that paper and learned a lot.

The ESID entire registry had 23 with C2 deficiency and yes, infection with S. pneumonae and others is  an issue as I now have learned from you all and the paper.

It will interesting to hear from Jason Raasch about the number and validity of the cases he is talking about…

Andy Saxon, MD
Professor of Medicine
UCLA

From: Nacho Gonzalez [mailto:nachgonzalez at gmail.com]
Sent: Tuesday, April 14, 2015 8:18 AM
To: CIS-PIDD
Subject: Re: [cis-pidd] IVIG/ScIg for Complement deficiency?

The European experience has been recently collected and published this year in JCI (PMID: 25663093). No patient received IVIG (as has been said, it has no sense). 68% of them received prophylactic antibiotics (physicians in the UK were more likely to prescribe antibiotic prophylaxis than colleagues on the Continent for patients with classical pathway defects). Perhaps Peter Arkwright (colleagues from Manchester collected the data) may explain specifically the EU approach concerning C2 def patients. Vaccines are the cornerstone for the prophylaxis in these patients.

Luis Ignacio Gonzalez Granado
Immunodeficiencies Unit
Pediatrics
Hospital 12 octubre. Madrid. Spain

2015-04-14 16:58 GMT+02:00 Saxon, Andy M.D. <ASaxon at mednet.ucla.edu<mailto:ASaxon at mednet.ucla.edu>>:
As Joe said, makes no sense.  There is a growing group of less than critical folks who are using IVIG (and charging for it through their practices) for all sorts of inappropriate diagnoses and making “appropriate” diagnoses, e.g. CIDP) with little basis so as to give IVIG as a revenue stream.

How many cases of real C2 deficiency have you got floating around up there anyway? And I thought the concern was autoimmunity, not infection in real C2 deficiency as opposed to say C8 deficiency. I’d like to hear from some of you great Peds folks in addition to the outstanding Joe Church..

Andy Saxon, MD
Professor of Medicine
UCLA

PS – Hi Joe!

From: Church, Joseph [mailto:JChurch at chla.usc.edu<mailto:JChurch at chla.usc.edu>]
Sent: Tuesday, April 14, 2015 7:51 AM
To: CIS-PIDD
Subject: RE: [cis-pidd] IVIG/ScIg for Complement deficiency?

This makes no sense to me.  The patients’ problem is not the inability to make antibodies, it is the inability to use complement that is activated by the classical pathway (or lectin pathway) regardless of the source of antibodies.

Joe Church
Children’s Hospital Los Angeles

From: Jason Raasch [mailto:jraasch at midwestimmunology.com]
Sent: Monday, April 13, 2015 1:31 PM
To: CIS-PIDD
Subject: [cis-pidd] IVIG/ScIg for Complement deficiency?

Hello everyone.

I have heard of some practitioners in our region using IVIG as sole management for isolated C2 deficiency in infants/children (i.e. instead of prophylactic antibiotics, immunizations for encapsulated organisms, etc.).  The feeling is long-term use of prophylactic antibiotics in these cases is irresponsible.

I will be honest and admit I have not heard of this before or found much in the literature.  What am I missing here?

I would appreciate any comments.

Regards,

Jason

Jason Raasch, MD

Midwest Immunology Clinic
15700 37th Ave N, Ste 110
Plymouth, MN 55446

TEL: (763) 577-0008
FAX: (763) 577-0192

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