I have sent the following survey to physicians that showed interest in discussing Cryptogenic chronic hepatitis( although you’ll find majority to “shy” away from this topic ):

I have sent the survey with following questions to physicians that showed interest in discussing Cryptogenic Chronic Hepatitis( although you’ll find majority to "shy" away from this topic ):

1. Are cryptogenic cases clinically similar or they ran a gamut, what are their main symptoms, abnormal blood tests( which and what range )?

2. Which are the treatments used and what is their approximate success rate( is it reduction or normalization of results, improvements on histology, remission of symptoms ), and how does it compare to HBV and HCV patients?

3. Are treatments usually to prolong patients life or are there some patients that actually get cured?

4. Since in the absence of serological positive results this is considered experimental treatment, most insurance companies will not cover the cost of IFN, how do patients deal with this( does Schering-Plough or other companies provide help in the form of Compassionate Use Programs or Patient Assistance Programs, and how hard is to get approved by them - helpful phone numbers)?

Here is the reply from Paul J Gaglio, MD, Liver Transplantation, Tulane University School of Medicine:

"I think that it is hard to generalize about patients with cryptogenic hepatitis because a fair number of these patients have a true diagnosis, ie, NASH or undiagnosed hemochromatosis, Wilson’s, autoimmune hepatitis. The presentations run the gamut and can not be "pigeonholed". I would recommend that all patients with so called "cryptogenic hepatitis or cirrhosis" be fully worked up including serology for Hep B, PCR for Hep C, ANA, Anti-sm muscle Antibody, Anti LKM, Ceruloplasmin, Alpha 1 antitrypsin levels. Also, if possible, a liver biopsy either standard or transjugular should be performed. I think that if all of this work up is performed and the diagnosis is still "cryptogenic", consideration should be given to empiric treatment with Interferon if the biopsy looks like viral hepatitis. This should probably be done in concert with an experienced hepatologist. I do not know if the insurance companies will not cover therapy, but most likely, Schering, Roche, or Amgen would provide this through a "commitment to care" type program. Good luck! PJG"

Thank you Paul, we could use some luck for sure!-)

To my additional question should the treatment be started with immunosupression with Prednisone, Paul replies: "I almost never treat patients with Prednisone empirically as this may exacerbate viral replication, steatosis in NASH and cause multiple other problems."

The list of physicians is growing, please send your experiences as a patient or physician dealing with this disease.

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