Autoimune Hepatitis/Mono

[OhioPaul]

Hi all,

I am a 37 Yr old Male.  January 1st (2004) I came done with Infectious Mono, with mild jaundice, (Some minor Visual Hallucinations) on top of the normal symptoms.  After a few days on Prednisone (sp?), the symptoms improved and I gradually returned to work.

Two months later, I was experiencing RUQ pain, and was diagnosed with a poorly functioning Gallbladder.  I had this out via a standard three whole procedure. By May I was feeling fine. (My surgeon commented that he had seen occur this before, but he did see any gross abnormalities/scaring)

In July a similar but slightly different set of pain symptoms developed.  I just received the results of my latest labs and ultrasound.  No masses evident, Hi AST 117, Hi ALT 190, ALK 88 Monocyte/Monocyte % Both High, Smooth Muscle High, Negative/non reactive on all Hep screens.

My doctor said possible Autoimmune Hepatitis, and has sent me on to a specialist. (My doctor said a biopsy would be necessary to confirm)

The problem is it will be at least two months before the specialist can see me.  Should I be on Steroids now?  Why wait on more damage?

[lisa s.]

I was finally diagnosed with AIH 11 years ago, only after being tested for Mono and Lupus and a whole batch of other auto-immune diseases. Luckily for me (well, if you can call it lucky) I was already in the hospital with pnuemonia and severe anemia and a liver infection (I was 17.) They did all the tests, including the biopsy at that time. They still, however could not conclusively diagnose me. After being hospitalized twice in 2 months, the diagnosis came back, AIH. I don't remember what any of my numbers were at the time, or the dose of prednisone and imuran I was on. All I know is that I gained about 50 pounds and it feels like I've spent the last 11 years trying to get rid of it. I was on prednisone for about a year and a half, the imuran for 2 years. I was completely drug free and doing well, until 1998 when I 'flared' up again. I was unable to see a specialist for about 2 months as well, so I went to a Naturopath. The remedies she gave me helped to reduce the inflammation until I was able to see the specialist. He tried to get me back on the steroid, but I refused and am now on 100mg of imuran per day. My test results are always normal. However, I now have type II diabetes, caused from the steroid. Well, all my specialists have differing opinions on this.

Anyway, to make a long story short, as someone mentioned, every case is different. This is just my experience. I've been told I am somewhat more susceptable to other autoimmune diseases, and because of the imuran, I am more prone to infections. So far, so good.

I would try to get into see another specialist, or if you can't and aren't opposed to seeing a naturopathic doctor, I would highly recommend it. Good luck with whatever you choose to do.

[kelmalec1]

Hi Paul!  Your post caught my eye not only because you are looking for a doc in Ohio but you had mono and then possibly autoimmune hepatitis.  I too am from Ohio (I see specialists at the cleveland clinic).  Last year around this time i came down with mono and then became jaundiced.  I was hospitalized because my liver began to fail - i was very ill and they didn't really know what was wrong besides the mono.  after over two weeks (including numerous invasive tests) at the clinic they finally got my biopsy results and diagnosed autoimmune hep. i have been on prednisone since (as well as imuran).  your enzymes are not in the 'crazy high range' but if it is autoimmune hepatitis your doctor will probably begin you on steroid treatment to stop the inflammation (as shown by the increased enzyme levels).  you need to stop inflammation because this eventually leads to fibrosis and then cirrhosis.  if it is autoimmune it seems as if you may be in the early stages and can treat it before any damage might occur.  if you are near the clinic and would like some info on the docs there i do have some info i can pass on to you (i've been a regular there for over a year and have been getting to know the entire hepatology staff just about).  hopefully you don't have autoimmune and your enzymes are still elevated from the affects of mono.  but if it is autoimmune, and you need more information or want to talk i can help answer any of your questions or tell you where to find valuable resources for this disease on the web.  hope you get some good news and please contact me if you would like to talk further.  take care!  

Kellie Malec

[annainitaly]

hi paul
I am an autoimmune patient (cholangitis & PBC; not AIH) who sticks around here. have you given a look at the hepatologist's answers on medhelp ? you can find a lot of info there about AIH. what I understand is that every AIH patient is different and so the treatment has either to be started urgently / or,in other cases, can wait for some time.
I don't know if your doctor will choose to treat you on steroids before a biopsy will show clearly your situation. maybe you don't even need steroids at the moment (your bloodwork doesn't look so impressively bad to me... but I'm NOT an expert!) . that could be a question for the site's doctor. he can also suggest some specialist's name/hospital in your area.  

please let us know how you are doing.  till then, I wish you good luck and serenity.
anna

[OhioPaul]

Thanks, I took your meaning correctly. I'm trying to find another doctor in the Cleveland, Ohio are.  But I don't know even where to begin.  

I understand that I can't start the treatment until the testing is complete. (I assume it would alter the results)