Gastro vs Hepato

[Mom071]

Hi Everyone ~
My 17 year old daughter was just diagnosed with severe autoimmune hepatitis, end stage (4 of 4), and her liver has started to harden (2 of 4). We have been trying different treatments, and she is currently seeing a pediatric gastroenterologist. Her liver numbers were going down on high doses of Prednisone, but as we wean down on that and introduce immunosuppressive drugs, her liver numbers are climbing fast again. So we are going back up on Predisone now and not increasing the immunosuppressive drugs just yet. I am concerned, because I know Prednisone is not a long-term-use drug. I am wondering if she needs to see a hepatologist instead of her gastroenterologist, or if they are pretty much one in the same? Any advice will be so greatly appreciated!
Thank you :)

[orphanedhawk]

Ditto.
I had ESLD, end stage liver disease, and one of the best things I did was switch from a GI to a hepatologist.
Please do so asap.
Good luck.

[pooh55811]

I agree with everything Ceanothus said.

She definitely needs to be seen by a Hepatologist at a large medical center, preferably one affiliated with a university.

Wishing you the best.

PS: There is another forum here that deals with Autoimmune Hep but I just looked at it and hardly anyone there posts (or responds to posts).  

[ceanothus]

Oh no, they are not really equivalent. Hepatologists focus all of their studies and attention on just liver problems, whereas gastroenterologists have to spread themselves out to cover problems from ranging from swallowing, esophageal issues, stomach, gall bladder, small intestines, colon, rectum and anus. It's just not possible for them to keep entirely up to date on complicated liver issues, and autoimmune hepatitis is one of the most complicated illnesses out there. Please get her referred to a really good hepatologist ASAP! Preferably one who works at a large medical center, even if it is a drive to get to one, as for her problem it is important to have the resources of a large institution readily available so its easy for the treating physician to confer with other specialists in order to find the best solutions. In this case you may need the input of an immunologist or some other specialist in consultation with the treating hepatologist.

I also believe there is another community forum here that deals specifically with autoimmune hepatitis , and you might get better help there. We are mostly hepatitis C patients on this forum. I wish you and your daughter the best.