[CIS PIDD] [cis-pidd] VS: SCIG or IVIG in Netherton syndrome?

[CIS-PIDD]

Netherton belongs to Finnish Disease Heritage PIDs like CHH, APECED, AICDA deficiency.
We have started it now to I think three individuals (the last I heard). We yet have no long-term follow up information.

Patients thus far seem to subjectively benefit from it, but they are actually mainly followed up by our dermatologists.

Fabian, I will connect you with our dermatologists in charge of this, outside Listserv, you may get more precise info from them. AFAIK, all get IVIG, Netherton skin makes one hesitant to use SCIG.

ATB

Mikko

Lähettäjä: CIS-PIDD [mailto:cis-pidd at lists.clinimmsoc.org]
Lähetetty: 9. tammikuuta 2017 14:56
Vastaanottaja: CIS-PIDD <cis-pidd at lyris.dundee.net>
Aihe: [cis-pidd] SCIG or IVIG in Netherton syndrome?

Dear All,

I would like to ask your opinion and/or experience in treating patients with Netherton syndrome with s.c. and/or i.v. immunoglobulin. Published data is scarce and I can not find strong evidence to do so.

Thank you in advance, Fabian

Fabian Hauck, MD, PhD

Attending physician / Head Immunodeficiency Unit and Immunological Diagnostics Laboratoy
Pediatrics / Pediatric Hematology and Oncology / Immunology (DGfI)

Dr. von Hauner Children's Hospital
Klinikum der Universität München
Lindwurmstr. 4, 80337 München
Germany

Tel.: +49 89 4400-53931
Fax: +49 89 4400-53964
E-Mail: fabian.hauck at med.uni-muenchen.de<mailto:fabian.hauck at med.uni-muenchen.de>


www.klinikum.uni-muenchen.de<http://www.klinikum.uni-muenchen.de/>

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Das Klinikum der Universität München ist eine Anstalt des öffentlichen Rechts (AöR)
The Klinikum der Universität München is an Institution under Public Law


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