[CIS PIDD] [cis-pidd] FMT for C.Diff in CTLA4

Mon Dec 19 17:24:47 EST 2016

Dear all

Many thanks for the helpful advice. I will explore the possibility of faecal filtrate and IgG via NJ tube. We will increase the dose of IVIG prior to the procedure and for a period afterwards.

We would be happy to contribute / collaborate on the cohort study for CTLA4 with our patients; will.rae at nhs.net

Yours sincerely
Will

Dr William Rae
Clinical Immunology Specialist Registrar
NIHR RD-TRC Immunology Clinical Research Fellow
University Hospital Southampton, UK
________________________________________
From: CIS-PIDD [cis-pidd at lists.clinimmsoc.org]
Sent: 19 December 2016 21:00
To: CIS-PIDD
Cc: David Egg
Subject: Re: [cis-pidd] FMT for C.Diff in CTLA4

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Dear Will,
We are collecting in Freiburg the world¹s largest cohort of
CTLA4-insufficient individuals with currently 142 patients, curated by
David Egg (in cc).
This list-serve does not accept attachments, so I would need you personal
Email address to send you our current data capture sheet.
Would you be willing to contribute your patient?
The next questions we need to answer are:
1. What malignancies do these patients get?
2. What are the best drugs to threat their immune dysregulation?
3. What determines that some of them actually stay quite healthy until
late age?
Yours, Bodo

****************************************
Univ.-Prof. Dr. med. B. Grimbacher

Scientific-Director
CCI-Center for Chronic Immunodeficiency
UNIVERSITÄTSKLINIKUM FREIBURG
Tel.: 0761 270-77731  Fax: -77744
Breisacherstraße 115, 79106 Freiburg
bodo.grimbacher at uniklinik-freiburg.de
www.uniklinik-freiburg.de/cci

and

Consultant Immunologist
Institute of Immunity & Transplantation
Dept of Immunology
Royal Free Hospital
UNIVERSITY COLLEGE LONDON
Pond Street
London NW3 2QG
b.grimbacher at ucl.ac.uk

www.centreforimmunodeficiency.com

Am 19/12/16 21:05 schrieb "CIS-PIDD" unter <cis-pidd at lists.clinimmsoc.org>:

>Dear all
>
>We are managing a 70yr man with CTLA4 haploinsufficiency who has
>refractory clostridium difficile (ribotype 078) infection. We have tried
>6 months oral vancomycin, 2 weeks oralmetronidazole, and multiple courses
>of fidaxomicin, but with no success. He has a background of
>hypogammaglobulinaemia (on IVIG with trough levels 11g/l), lymphocytic
>colitis, interstitial lung disease, and bronchiectasis. The initial
>C.Diff infection was probably due to courses of antibiotics for infective
>exacerbations of bronchiectasis.
>
>Lymphocyte counts currently are;
>
>CD3+ 1500 (cells/mm3)
>CD4+ 440
>CD8+ 1020
>CD19+ 20
>NK (CD16/56+) 120
>
>IgG 11.4g/l
>IgA <0.07
>IgM <0.2
>
>We are now considering a faecal microbiome transplant (FMT) via NJ tube.
>We feel the risk/benefit of infection from the FMT is less than that of
>the longterm C.Diff, and knock-on effects on quality of life and
>nutritional status.
>
>Has anyone had any experience of FMT in patients with PIDD? Are there any
>additional precautions you would advise?
>
>Many thanks
>
>Will
>
>
>
>Dr William Rae
>Clinical Immunology Specialist Registrar
>NIHR RD-TRC Immunology Clinical Research Fellow
>University Hospital Southampton, UK
>
>
>
>
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