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

[Nacho Gonzalez]

Dear Mikko and Panida,

I can only add one recent experience with oral ribavirin 2.5mg/kg every 12
h following advice from Great Ormord Judith Breuer( j.breuer at ucl.ac.uk ),
they also use scalating doses with RBV through levels. After one month the
patient cleared the infection (the underlying condition is severe T-cell
deficiency). I think you should contact with them.
Best regards,

Luis Ignacio Gonzalez Granado
Immunodeficiencies Unit
Hematology and Oncology Unit.
Hospital 12 octubre
Madrid. Spain

2014-07-17 8:20 GMT+02:00 Seppänen Mikko <Mikko.Seppanen at hus.fi>:

>  Dear Sriaroon,
>
>
>
> We have thus far used enteral IgG (nasojejunal tube, see J Clin Virol,
> 2013, 58:306-8)  to one patient. While it may be too early to judge, it
> does not seem promising and I have heard of failed similar attempts from
> other centers.
>
>
>
> We have altogether 3 CVID patients who would - truly desperately - need
> effective treatment (extremely severe enteropathy and malnutrition despite
> substitution, low troughs due to severe PLE, chronic noroviral enteritis),
> and I wonder if anyone has attempted combinations of the newer systemic
> antivirals? My guess is that somewhere someone is already studying this
> (and we would have 3 study subjects, and the rest of Finland more...). What
> we need is a multinational, multicenter effort?
>
>
>
> Sorry that I can be of no proper help,
>
>
>
> 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:* Sriaroon, Panida [mailto:psriaroo at health.usf.edu]
> *Lähetetty:* 17. heinäkuuta 2014 5:40
> *Vastaanottaja:* CIS-PIDD
> *Aihe:* [cis-pidd] Chronic norovirus enteritis in CVID
>
>
>
> 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 <E-mail%3Apsriaroo at health.usf.edu>*
>
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