[CIS PIDD] [cis-pidd] CVID and norovirus - experiences with tissue PCR?

[Cunningham-Rundles, Charlotte]

I have not had a positive norovirus yet.  I see plenty of GI disease.

So am I wondering if this is restricted in geography to any extent.

Or if our tests are no good.


Charlotte Cunningham-Rundles, MD, PhD

Departments of Medicine and Pediatrics

The David S Gottesman Professor

The Immunology Institute

Mount Sinai School of Medicine

1425 Madison Avenue

New York, NY 10029

Phone: 212 659 9268

Fax: 212 987 5593

Email: Charlotte.Cunningham-Rundles at mssm.edu


From: <Church>, "jchurch at chla.usc.edu<mailto:jchurch at chla.usc.edu> " <jchurch at chla.usc.edu<mailto:jchurch at chla.usc.edu>>
Reply-To: CIS-PIDD <cis-pidd at lyris.dundee.net<mailto:cis-pidd at lyris.dundee.net>>
Date: Monday, August 10, 2015 at 3:45 PM
To: CIS-PIDD <cis-pidd at lyris.dundee.net<mailto:cis-pidd at lyris.dundee.net>>
Subject: RE:[cis-pidd] CVID and norovirus - experiences with tissue PCR?

Thank you, Mikko.  JC

From: Seppänen Mikko [mailto:Mikko.Seppanen at hus.fi]
Sent: Monday, August 10, 2015 4:41 AM
To: CIS-PIDD
Subject: [cis-pidd] CVID and norovirus - experiences with tissue PCR?


Dear all,

on this list, the problems of CVID patients with norovirus pop up time to time, very regularly.

In our cohort, it is - together with granulomatous inflammation - the biggest clinical problem (and enteropathy is a serious harbinger of early death in CVIDs in general). And both are extremely frustrating to treat.

I decided to “advertise” the following article (with which I personally have nothing to do) by the Cambridge group, since it escaped my radar for over 6 months. Maybe there are others on the list as unperceptive as I have been?

-------------------
Am J Gastroenterol.<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=0U0lx4Rcvb4MxUCv727EvGy_WFZXFMuXuWj1Z8kQbDE&e=> 2015 Feb;110(2):320-7. doi: 10.1038/ajg.2014.432. Epub 2015 Jan 27.
The role of chronic norovirus infection in the enteropathy associated with common variable immunodeficiency.
Woodward JM<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DWoodward-2520JM-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=-dIMI7tG_QZQYrqdiPOqw_Bggnar8o2vr2iSb20yqkc&e=>1, Gkrania-Klotsas E<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DGkrania-2DKlotsas-2520E-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=R-1hscUZIy02T-NIAGVp27YfyiTHQxt66VHo49nNLrE&e=>2, Cordero-Ng AY<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DCordero-2DNg-2520AY-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=ugZgrUZyAOyQbSVWD3iksrmnJ9YvDCHvl1a60XJAsNY&e=>3, Aravinthan A<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DAravinthan-2520A-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=BUQ6GgSQEytY6-1MeD7ByIi7KT-7nQSVNHYvO7cLDbY&e=>4, Bandoh BN<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DBandoh-2520BN-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=Cy2nF_rumKI_nZHK_aR01kIUFk9DbH_TIvfHmTwc-xY&e=>5, Liu H<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DLiu-2520H-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=ubE6_xlzQWlXaW5-DUBvmHBxf6NWUXvqpMWv47B5ZFE&e=>5, Davies S<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DDavies-2520S-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=osRY5JipgzzF5Gh00cwaPGMCyOw94reuxM29NVhnlbI&e=>5, Zhang H<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DZhang-2520H-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=cm4Iqx7c7UhhxIDu1liAobiT_sOk3iYPk5aUXW-5hoU&e=>3, Stevenson P<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DStevenson-2520P-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=pWQ38tWMPNULKqUL2hC3iB-6-MaZrbm76N45Z3lgmsI&e=>6, Curran MD<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DCurran-2520MD-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=AV0B73wBw0UiWpsXh0EVd52f_R_eRYsHwwxGWdL7Gts&e=>3, Kumararatne D<https://urldefense.proofpoint.com/v2/url?u=http-3A__www.ncbi.nlm.nih.gov_pubmed_-3Fterm-3DKumararatne-2520D-255BAuthor-255D-26cauthor-3Dtrue-26cauthor-5Fuid-3D25623655&d=AwMFAw&c=4R1YgkJNMyVWjMjneTwN5tJRn8m8VqTSNCjYLg1wNX4&r=QGeqhJvykW4yvKu3feHGV3OR4Jd0_7mLxxRziSb0VN09Y3JhLYqM2xTrIP4WRFJr&m=5_0pH1hZAHlekhdLJgQbwa7pHnB4oM0JBRex3L3DgJ0&s=JUyecammjlNXtVZfLov8RgMuw8m45BG-F6dqnvnpEBo&e=>6.

----------------------

Interestingly, it suggests that fecal PCR is not sensitive enough and that one should use tissue-PCR in (all) CVID enteropathy patients…

Cambridge reached clearance in 2/8 patients with ribavirin monotherapy.

Our patients seem very resistant (all = riba, riba+IF, as well as nitazoxanide in combination with the other agents, all tested in our most severe case).

QUESTIONS:
Do people already share the experience of Cambridge group?
Has anyone else

a)      tested tissue-PCR?

b)      therapy in their cohorts (which you are not about to publish)?

If you already know the article, apologies for an unnecessary intrusion!

Curious,

Mikko
oyl Mikko Seppänen
Harvinaissairauksien yksikkö (HAKE), HUS

Mikko Seppänen, MD, PhD, Associate professor
Specialist in Internal Medicine and Infectious Diseases
Chief, Rare Disease Center, Helsinki University Hospital (HUH)
Children’s Hospital, P.O.Box 280
FI-00029 HUS
FINLAND
&
Senior Consultant (PIDD)
Adult Immunodeficiency Unit
Inflammation Center, HUH

phone +358 9 47180201
GSM +358 50 4279606
fax +359 9 47174703



oyl Mikko Seppänen
Harvinaissairauksien yksikkö (HAKE), HUS

Mikko Seppänen, MD, PhD, Associate professor
Specialist in Internal Medicine and Infectious Diseases
Chief, Rare Disease Center, Helsinki University Hospital (HUH)
Children’s Hospital, P.O.Box 280
FI-00029 HUS
FINLAND
&
Senior Consultant (PIDD)
Adult Immunodeficiency Unit
Inflammation Center, HUH

phone +358 9 47180201
GSM +358 50 4279606
fax +359 9 47174703


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