[CIS PIDD] [cis-pidd] Chronic norovirus enteritis, update and Q

Sat Jan 3 13:19:15 EST 2015

Thanks for all of Your kind replies! 

Philipp: no I have not, a good suggestion. I have tried to find info on newer agents and their activity against norovirus, seems like not much has been published..

Klaus: certainly we did check for monoallelic CTLA4 mutations. 

My thanks to Drs Bleesing and Sokolic also for invaluable information on colostrum and p.o. IgG dosing! If needed I will try all of these if possible, in the patient's case this seems vital... including Entocort or even rapamycin... 

Mikko Seppänen, Finland

________________________________________
Lähettäjä: philipp.henneke at uniklinik-freiburg.de [philipp.henneke at uniklinik-freiburg.de]
Lähetetty: 31. joulukuuta 2014 19:57
Vastaanottaja: CIS-PIDD
Kopio: CIS-PIDD
Aihe: Re: [cis-pidd] Chronic norovirus enteritis, update and Q

Have you already tried nitazoxanide, which has good activity against norovirus? It may be worth a try.
Regards
Philipp

Philipp Henneke, MD
Professor
Head Ped. Infectious Dis & Rheumatology
UNIVERSITY MEDICAL CENTER FREIBURG
Center for Chronic Immundefiency (CCI)
Center for Pediatrics & Adolesc. Medicine
phone assist/ office + 49(0)761270 77640
mobil +49 (0)162 285 2481
fax +49 (0) 761 270 77600
Breisacherstr. 117-2.OG, 79106 Freiburg
Germany
philipp.henneke at uniklinik-freiburg.de
http://www.cci.uniklinik-freiburg.de

-----Bodo Grimbacher <bodo.grimbacher at uniklinik-freiburg.de> schrieb: -----
An: "CIS-PIDD" <cis-pidd at lists.clinimmsoc.org>
Von: Bodo Grimbacher <bodo.grimbacher at uniklinik-freiburg.de>
Datum: 31.12.2014 17:34
Betreff: Re: [cis-pidd] Chronic norovirus enteritis, update and Q

When I was an MD student in Freiburg (so many years ago:),
our Hospital's “Milk-unit” also offered human colostrum.
I wonder whether this is still available?
Best wishes for the New Year 2015!
Yours, Bodo
****************************************
Univ.-Prof. Dr. med. B. Grimbacher

Scientific-Director
CCI-Center for Chronic Immunodeficiency
UNIVERSITÄTSKLINIKUM FREIBURG
Tel.: 0761 270-77731  Fax: -77744
Engesserstraße 4, 79108 Freiburg
bodo.grimbacher at uniklinik-freiburg.de
www.uniklinik-freiburg.de/cci

Von: "Bleesing, Jacob" < Jack.Bleesing at cchmc.org<mailto:Jack.Bleesing at cchmc.org>>
Antworten an: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org> >
Datum: Wednesday 31 December 2014 13:42
An: CIS-PIDD < cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>
Betreff: RE: [cis-pidd] Chronic norovirus enteritis, update and Q

Just an FYI to consider setting up in Europe (if not already underway).

https://clinicaltrials.gov/ct2/show/NCT02025478

We are expanding this trial to use breastmilk for norovirus – both in the context of BMT and PID (based on promising results in the MILK study).

Regards,

Jack

From: Klaus Warnatz [mailto:klaus.warnatz at uniklinik-freiburg.de ]
Sent: Wednesday, December 31, 2014 6:40 AM
To: CIS-PIDD
Subject: Re: [cis-pidd] Chronic norovirus enteritis, update and Q

Hi Mikko,

this is a problem that many of us face. After failing all your attempts:
I do think that it is worth keeping her on gluten-free diet with the DQ8+, add immunosuppression. It was not clear to me whether she was on steroids or not.
Immunosuppressive therapy doesn't clear the norovirus infection but improves the diarrhea in several patients.
We usually start with budesonide 9mg/day (1x3mg capsule opened and supplied with smashed apple) if not sufficient we continue with systemic steroids and if that fails rapamycine.
Did you check her for CTLA4 deficiency (decreasing B cells, GI etc) but could be others.
Do you think she had NRH? portal hypertension?

greetings and a happy new year to all

klaus

Prof. Dr. med. Klaus Warnatz

UNIVERSITÄTSKLINIKUM FREIBURG
University Medical Center Freiburg
Center for Chronic Immunodeficiency
Division of Rheumatology and Clinical Immunology

Tel: +49-761-270-77640 / FAX -71000 / Pager: 12-7100

Breisacher Str. 117, 79106 Freiburg, Germany
klaus.warnatz at uniklinik-freiburg.de<mailto:klaus.warnatz at uniklinik-freiburg.de>
http://www.uniklinik-freiburg.de/cci

Am 31.12.2014 um 07:33 schrieb Mikko Sepp �nen:

Dear all,

we have now attempted to our most affected patient all other in Listserve-suggested means of therapy (IFN, IFN+ escalated riba, the latter has caused further diarrhea and vomiting) except daily p.o. IgG , to no avail. IFN+ escalated riba for 2.5 weeks did not clear norovirus. Due to the side effects and further weight loss caused by it, the patient cannot continue this approach.

Q: Robert Sokolic suggested 5ml/day of Gamunex, mixed with orange juice. Was a 5% or 10% prep used at the time?
I seem to recall that someone had recently used this approach successfully as well. Their dose?

Patient case in more detail:

The patient is 31-y young recently married female, 174 cm tall, weighs only 40 kg now (!!!), has CVID of unknown genetic origin (WES: no known genes).

CVID noted after ITP --> ITP+AINP (Evans)and  S.aureus sepsis 2004, recurrent LRTIs since 1998. Bronchiectasis already when diagnosed, HRCT mild follicular bronchiolitis.

EGD- and IC-scopy performed a year ago, after following celiac diet no active cellular inflammation which You could treat with immunomodulators, however severe malabsorption of protein, calories, lipid soluble vitamins continues....

Ciprofloxacin a.s.f. attempted ex juvantibus to no avail, bacterial overgrowth seems unlikely. Further causes for diarrhea tested and not found (We are actually preparing a manuscript on GI manifestations in CVIDs in our cohort, this lady has been tested for all known and unknown alternative causes...).

We are left with - in biopsies after celiac diet very moderate - enteropathy resembling coeliac disease with only subtotal villus atrophy (HLA-DQ8+), mild chronic PBC-like cholangiopathy: sinus dilation with mild sinusoidal fibrosis in biopsy, in ERC mild cholangipathy (Adursal), chronic norovirus, severe diarrhea and severe malabsorption. She also has gastroparesis of completely unknown origin (no SFN, no diabetes...).

She further has asthma, lymphatic hyperplasia (spleen 13 cm). She receives s.c. Gammanorm 16.5% 120ml /week (SIC!), P-IgG before norovirus therapy attempts 12.9-13.1, now 10.9 g/l...(more diarrhea)

She has no switched-memory B cells, during follow up loses all B cells from blood (no thymoma), CD4 and CD8 counts normal, NKs 0.04 (low). Her Treg counts are normal, though function seemed somewhat but mildly impaired. Rapamycin not attempted.

Any further suggestions?

I appreciate Your time spent, thanks in advance,

Mikko Seppänen, MD, PhD
Helsinki, Finland
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