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New to forum, diagnosed with IGH

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Posted 7/11/2011 4:11 PM (GMT 0)
Good Morning,

I would like to introduce myself to the group. about three years ago I was diagnosed with Idiopathic Granulomatous Hepatitis, this was after several years of trying to figure out what the heck I had.

Symptoms include: fevers, fatigue, flu like symptoms, etc...

I have joined this forum hoping to get some support and possibly meeting someone with the same illness. I have not found a support group on the web for this condition, but since the treatment is basically similar I was hoping I could benefit from the wealth of knowledge you have here.

My Doc says this is pretty rare, but is hopeful we can control the disease, and treats it like any other autoimmune disease.

Thanks for listening turn
Posted 7/11/2011 5:12 PM (GMT 0)

Welcome to HealingWell Hockeymom1!

I had never heard of IGH but did a quick read and will certainly keep reading.  Pretty interesting but I'm sure quite frustrationg for you for the last few years.  Not knowing what is ailing you yet knowing something isn't right is a tough position to be in!

I don't believe we have anyone else with IGH but maybe some of the lurkers do and they will finally write in seeing as someone else has broken the ice tongue .

In any case, what medications are you on?  How are you feeling and how often do you see the docs?  What part of the world do you live in?  I am in California and have AIH (autoimmune hepatitis).  I am only on Imuran now and have been off pred since Dec 2008.  My LFTs are spot on normal and can't look any better!

I look forward to hearing more about IGH!

Posted 7/11/2011 5:37 PM (GMT 0)
Thanks for the welcome. Medications have been daunting but go fairly the same as AIH. Currently on Plaquenil, Imuran,Prednisone, and Ambian. Just switched things up as I started taking methotrexate 2 months ago and that somehow shot my AST's and ALT's through the roof. My belly isn't taking to kindly to my new diet of medications. Is there a section where people discuss medication on this forum?
Posted 7/11/2011 7:29 PM (GMT 0)
There are resource folders for general liver related info.  We usually just post questions and folks respond.  Are you on a proton pump inhibitor (prevacid, protonix, etc..)?  Long term pred can tear up your stomach lining. 

Posted 7/11/2011 7:38 PM (GMT 0)
Hockeymom1,

I do not have your liver disease, but yet another rare hepatitis called
Giant Cell or Neo Natal Hepatutis. It is extremely rare in adults. Infants often get it, but grow out of it. I was diagnosed when I was 29 so my liver had already experienced some cirhossis. I have been on prednisone for 20 years to control my enzymes. Tried Imuran, but it screwed up my red blood count. I have weaned down to 5mg of prednisone a day.

In 2008 I was transferred to the transplant center for care of ESLD, portal hypertension, edema, and HE. I had the tips procedure in February and have felt better than I have in the past year. I am on the transplant list, but my meld fluctuates between 13-16. So I am not sick enough for one at the present time.

Welcome!
Susie

S
Posted 7/11/2011 8:05 PM (GMT 0)

Hockeymom1, I just wanted to add my welcome to the others.  I have plain old hep C--expect to be placed on "the list" soon for transplant.  I can't recall anyone else here with IGH, but we do have people with a lot of different liver diseases.

Hugs,

Connie

Posted 7/11/2011 8:16 PM (GMT 0)
Welcome Hockeymom!

I'm a caregiver for my husband with end stage liver disease from alcohol. I don't know anything about your disease either, but I just wanted to say hi and hope maybe someone out there will come forward to help you!

Posted 7/11/2011 9:54 PM (GMT 0)
Thanks all for the warm welcome, I appreciate it much:)
Posted 7/11/2011 9:55 PM (GMT 0)
Also, yes I forgot, I do take prilosec daily for the prednisone.
Posted 7/11/2011 9:59 PM (GMT 0)
Welcome HockeyMom. This is a great group of people.

Emma
Posted 7/12/2011 1:32 AM (GMT 0)
Hi from FL,

I am a caregiver for a Hep C/Cirrhosus liver transplant recipient.

Not sure if that is the last step for your syndrome, but loo through my old posts...we have had a horrible year, with a great outcome.

Mike is 9 weeks post transplant and doing very well, better than in years.

Best,

MamaLama

Posted 6/7/2017 8:49 PM (GMT 0)
Hello HockeyMom,

I am new to the group, and don't know anyone else with granuloma hepatitis.

I was diagnosed with Granulomatous Hepatitis at age 3, I'm now 34. I also have a primary immunodefiancy (PI) called Common Variable Immune deficiancy (CVID). I've been receiving immunoglobulin (IVIG) every 4 weeks since I was 11. The IVIG has kept me fairly healthy. Every few years I may get a low-grade fever that lingers for a few weeks, usually after/during a virus, where it seems my immune system doesn't know what to do.
I have resisted taking prednisone, and have only taken it when I was 4 years old because my fevers would not go away. I have seen quite a few immunologists/liver specialists over the years. Most caution my taking steroids because of the risk of infection and potential problems coming off them and getting ill.

I know it's been a while since your post, but if you have any questions I would be happy to connect.

Thanks to everyone here!
Posted 6/7/2017 10:48 PM (GMT 0)
hu Coastalo3,
yes it has been a while. this post is 6 years old. starting a new thread would be best. you have a much better chance of getting responses, if your subject is visible to all.
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