[CIS PIDD] [cis-pidd] Chronic norovirus enteritis in CVID

Thu Jul 17 22:47:06 EDT 2014

Dear colleagues,

Thanks for all inputs. I think we will give oral Ig a try first, and if no success we will definitely try other agents as suggested. The mTOR inhibitors such as sirolimus are something I was not aware of for the treatment of norovirus and would consider using it if all else fail. However, I would feel a little nervous given his history of cytopenia (lymphopenia and past history of neutropenia).

Will keep everyone posted of his clinical course.

Best regards,
Panida
________________________________
From: Seppänen Mikko [Mikko.Seppanen at hus.fi]
Sent: Thursday, July 17, 2014 8:43 AM
To: CIS-PIDD
Cc: 'Stephen Jolles'
Subject: VS: [cis-pidd] Chronic norovirus enteritis in CVID

Hi Ravi!

I have discussed with Stephen as well, quite a few times. My thoughts are that we definitely should try something - jointly... Bovine colostrum is an interesting thought... and if it would not work, then combination antivirals would be my guess... but all is just guesswork.

Mikko

dos Mikko Seppänen, LKT
Immuunipuutosv-o, HYKS

Mikko Seppänen, MD, PhD, Associate professor/Senior Lecturer
Specialist in Internal Medicine and Infectious Diseases
Senior Consultant, Physician in charge (PIDD)
Immunodeficiency Unit
Division of Infectious Diseases
Department of Medicine
Helsinki University Central Hospital
Hospital District of Helsinki and Uusimaa
Aurora Hospital, Ward 4-2 and Outpatient Clinic
P.O.Box 348
FI-00029 HUS, Helsinki
FINLAND
phone +358 9 47175923, fax +358 9 47175945

Lähettäjä: Ravishankar.Sargur at sth.nhs.uk [mailto:Ravishankar.Sargur at sth.nhs.uk]
Lähetetty: 17. heinäkuuta 2014 15:17
Vastaanottaja: CIS-PIDD
Aihe: RE: [cis-pidd] Chronic norovirus enteritis in CVID

Dear Panida,

We currently have a 42 year old Granulomatous CVID patient who has chronic norovirus for the last 8 months.

We tried stopping his immunosuppression ( MMF) - but it did not clear Norovirus.

I am aware of a similar case ( managed by Steve Jolles in Wales) who tried Immunoglolulins ( via a NG tube) - but was not successful.

I looked at this couple of weeks back and my thoughts were ( for our local MDT discussion)

1. Think we should consider  bovine Colostrum – nothing to lose and low  / no risk. It has been used for traveller’s diarrhoea prevention.

1a. Probiotics - unlikely to help

CDC report - The use of probiotics, such as Lactobacillus GG and Saccharomyces boulardii, has been studied in the prevention of TD in small numbers of people. Results are inconclusive, partially because standardized preparations of these bacteria are not reliably available. Some people report beneficial outcomes using bovine colostrum as a daily prophylaxis agent for TD. However, commercially sold preparations of bovine colostrum are marketed as dietary supplements that are not Food and Drug Administration (FDA) approved for medical indications. Because no data from rigorous clinical trials demonstrate efficacy in controlled trials, there is insufficient information to recommend the use of bovine colostrum to prevent TD.

http://www.neovite.com/?gclid=CNLv5tLOuL8CFc7MtAoddGcAHg

http://www.drugs.com/npp/bovine-colostrum.html

2. IgAbulin ( Baxter) does not come up in my searches -  Mel, try contacting the Baxter Scientific Team ( via the Rep)  - to see whether we can source an IgA preparation.

3. Oral IVIG ?  - I would probably consider Plasma ( as it contains IgA) in preference to IVIG.

Would be keen to hear what others thin about the above options !?

Regards

Ravi

Dr Ravishankar Sargur

MD, FRCPath, FRCP

Consultant Clinical Immunologist

Immunology, NGH

Sheffield Teaching Hospitals Foundation NHS Trust.

Honorary Senior Lecturer

Dept of Infection and Immunity

University of Sheffield

Training Programme Director

Immunology

East Midlands Deanery and Yorkshire & Humber Deanery

Email : Ravishankar.sargur at sth.nhs.uk

Phone : 0114 2715704

Hayley Rowan ( Secrretary) : 0114 2269020

Fax : 0114 2269244

-----Original Message-----
From: Sokolic, Robert (NIH/NHGRI) [E] [mailto:sokolicr at mail.nih.gov]
Sent: 17 July 2014 12:39
To: CIS-PIDD
Subject: Re: [cis-pidd] Chronic norovirus enteritis in CVID

Fabio Candotti and I had a patient with prolonged norovirus diarrhea after failed gene therapy for ADA-SCID.  We gave oral gamunex (5 mL of the iv preparation mixed with orange juice daily). Diarrhea resolved, but norovirus shedding remained for two years, during which time we continued oral Ig, and then resolved. During that time immunity did not improve.  We based our treatment on papers  describing the use of oral Ig for norovirus after small bowel transplant, which I believe are the same ones to which you refer. If not, I could send them.

Rob Sokolic

Sent from my iThing

On Jul 16, 2014, at 10:41 PM, "Sriaroon, Panida" <psriaroo at health.usf.edu<mailto:psriaroo at health.usf.edu>> wrote:

Dear colleagues,

We have a 15yo boy with CVID who presents with chronic norovirus enteritis for over 3 months now. He is on SCIG weekly with IgG level around 800s. Past history includes biopsy-proven GLILD treated with rituximab and Imuran a few years ago. He also has lymphopenia and low mitogen responses.

Aside from enteritis, he is doing fine infection-wise. We check his stool every few weeks and he is still shedding the virus. We plan on increasing his SCIG dose to raise the IgG level. In the meantime, his diarrhea is still ongoing (5x or more/d) and he is now losing weight.

I understand that the infection can persist for a prolonged period of time and was wondering if anyone has suggestion for the treatment for norovirus enteritis in CVID. There are several reports of oral Ig therapy given in divided doses for 1-2 days (extrapolated from treatment for rotavirus enteritis) with variable success, but most cases are s/p transplant or on immunosuppression.

We plan on building a case and requesting an authorization for oral Ig use from his insurance--which might not be easy since it is not a proven therapy.

Does anyone have any suggestions for the management of chronic norovirus infection in CVID?

Best,

Panida

Panida Sriaroon, MD

Assistant Professor

Associate Director, Fellowship Program

Associate Director, USF/All Children's Hospital Allergy/Immunology clinic

Beeper 727.825.4379

Office 727.553.3521

E-mail:psriaroo at health.usf.edu<http://health.usf.edu>

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