[CIS PIDD] [cis-pidd] Rubella in granulomas

[CIS-PIDD]

Hi Tony!

contact Kate.

There is fragmentary data, high IgG dosage, IFNalpha seem not to work, more unclear with riba and especially nita. And more data is needed. A systematic approach to th trials seems prudent. And formal testing for drug sensitivity.

No info on IFNg afaik, my previous message - like Kate quickly corrected - was a "mind typo".

My colleague Timo Hautala has some of the best experiences hands on, if you want I can connect you with him --> e-mail me off the Listserv?

Mikko

Oyl Mikko Seppänen
Harvinaissairauksien yksikkö (HAKE)
[X]

Head, Rare Disease Center,
Helsinki University Hospital (HUH)
FINLAND

phone +358 947180201
GSM +358 50 4279606
fax +358 9 47174703

CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>> kirjoitti 12.1.2017 kello 22.17:

Greetings,

I am caring for an 18 y/o male pt. with ataxia-telangiectasia who has exuberant cutaneous and hepatic granulomas which (both) stain positive for rubella capsid. I am looking for possible therapies to consider on the assumption that the presence of the virus has some role to play in pathogenesis. I am not aware that this has been "proven" in any case, which is why I call it an assumption. Things to consider:


1.       High dose IgG. While probably not effective by itself and there is some evidence to suggest lack of efficacy for established infection, it could be an adjunct to something else.

2.       Something else:

a.       Interferon - type 1, I have heard second-hand anecdotal report regarding a lack of efficacy but would be interested in hearing from someone who has tried it.

b.      Interferon gamma, not sure if anyone has tried it

c.       Ribavirin, I have heard anecdotally that it is being tried but I don't know about results

d.      Nitizoxanide, same

I would appreciate everyone's thoughts, thank you.

Tony B.

Francisco A. Bonilla, M.D., Ph.D.
Director, Clinical Immunology Program, Boston Children's Hospital
Associate Professor of Pediatrics, Harvard Medical School


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