Autoimmune Hepatitis and Me « johndhowell.com

Autoimmune Hepatitis and Me

I appreciate those of you have emailed me in response to my post, Down with the Sickness. Many of you have asked me what exactly Autoimmune Hepatitis is – so I thought that I’d take a break from my normal incoherent ramblings and share a little more about this disease.

Autoimmune hepatitis is a disease in which the body’s immune system attacks liver cells. This causes the liver to become inflamed (hepatitis). About 70 percent of those with autoimmune hepatitis are women, most between the ages of 15 and 40. (Yeah – I can hear the jokes now – thanks for your compassion! .

One job of the immune system is to protect the body from viruses, bacteria, and other living organisms. Usually, the immune system does not react against the body’s own cells. However, sometimes it mistakenly attacks the cells it is supposed to protect. This response is called autoimmunity. Researchers speculate that certain bacteria, viruses, toxins, and drugs trigger an autoimmune response in people who are genetically susceptible to developing an autoimmune disorder.

Fatigue is probably the most common symptom of autoimmune hepatitis. Other symptoms include:

• enlarged liver
• jaundice
• itching
• skin rashes
• joint pain
• abdominal discomfort
• fatigue
• spider angiomas (abnormal blood vessels) on the skin
• nausea
• vomiting
• loss of appetite
• dark urine
• pale or gray colored stools 
People in advanced stages of the disease are more likely to have symptoms such as fluid in the abdomen (ascites) or mental confusion.

Treatment works best when autoimmune hepatitis is diagnosed early. With proper treatment, autoimmune hepatitis can usually be controlled. In fact, recent studies show that sustained response to treatment not only stops the disease from getting worse, but also may actually reverse some of the damage.

The primary treatment is medicine to suppress (slow down) an overactive immune system  In about one out of every three people, treatment can eventually be stopped. After stopping, it is important to carefully monitor your condition and promptly report any new symptoms to your doctor because the disease may return and be even more severe, especially during the first few months after stopping treatment.

In about 7 out of 10 people, the disease goes into remission, with a lessening of severity of symptoms, within 2 years of starting treatment. A portion of persons with a remission will see the disease return within 3 years, so treatment may be necessary on and off for years, if not for life.

There are two primary types of medication used to treat this disease, Prednisone and Azathioprine.

Some possible side effects of prednisone are:

• weight gain
• anxiety and confusion
• thinning of the bones (osteoporosis)
• thinning of the hair and skin
• diabetes
• high blood pressure
• cataracts
• glaucoma 
Azathioprine can lower your white blood cell count and sometimes causes nausea and poor appetite. Rare side effects are allergic reaction, liver damage, and pancreatitis (inflammation of the pancreas gland with severe stomach pain).

These are the points to remember about the disease:

• Autoimmune hepatitis is a long-term disease in which your body’s immune system attacks liver cells.
• The disease is diagnosed using various blood tests and a liver biopsy.
• With proper treatment, autoimmune hepatitis can usually be controlled. The main treatment is medicine that suppresses the body’s overactive immune system.

Okay! – That’s the good, the bad and the ugly about Autoimmune Hepatitis.

So far, I’ve experienced every single side effect of the disease except for the fluid in my stomach – which is a good thing. With the medication, I’ve experienced weight gain (40 lbs in 3 weeks – YIKES!), anxiety and confusion, and thinning of the hair and skin.

My liver is currently operating within the normal limits of the disorder, so that’s good. If you would like to pray for something – you can pray for the fatique, stomach pain, and Joint Pain. Those seem to be the biggest things that bother and frustrate me the most.

So that’s the scoop on Autoimmune Hepatitis. If you’ve got any questions for me – go ahead and email them to me and I’ll do my best to answer them.

This entry was posted on November 13, 2007, 8:41 pm and is filed under Autoimmune Hepatitis. You can follow any responses to this entry through RSS 2.0. You can leave a response, or trackback from your own site.

#1 by Brad on December 3, 2007 - 12:07 pm

Hi John,

I ran across your site while searching the web, and “autoimmune” caught my eye.

My mom has Microscopic Polyangiitis (MPA), which is an autoimmune disease that attacks her lungs. She was minutes from death when the docs put her in an artificial coma for two weeks and figured out what was wrong with her. They started her on prednisone but now she’s on methotrexate and seems to be thriving! She no longer needs to use a walker and can get around anywhere, in fact she’ll be in Germany in a few weeks!

I know these autoimmune diseases can be scary and the drugs are no fun at all, but know that I’m praying for your recovery!

Brad

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#2 by Lynn on September 17, 2008 - 12:05 pm

HI,
I found your site searching on news about AIH. I am a 54 yr old woman who was diagnosed with AIH close to three years ago. I did not respond to the usual treatment and was sent to Duke University Hospital where I was put on Cellcept. I honestly think it saved my life. It has few side effects, but weight gain does not appear to be one of them. I look and feel like a new person.

#3 by Anna Bob Henn on February 27, 2009 - 10:52 pm

I have been recently diagnosed with AIH as well and am trying to do a blog as well about it… It sort of depressing, I have been on Prednisone for about a month and haven’t gained weight, but I am larger sized to start and really have improved my diet with the diagnosis… I just started azathiprine and wasn’t happy about it and the potential side effects – Ah! Hang in there with it… it’s better than not being here at all, and they told me I could die, thanks- that was comforting. It’s been a small nightmare, but i am here and fighting it every day! Anna

#4 by Anna Bob Henn on February 27, 2009 - 10:55 pm

I was recently diagnosed with AIH as well and have been on prednisone for about a month and haven’t gained weight, but my numbers are still high and now they put me on azathioprine against my wishes… I don’t want side effects and there are many, but at least I am alive and able to fight it every day. Take care and good luck with it!!! Anna

#5 by Toni on April 10, 2009 - 10:12 am

I just found your blog. I too have AIH. I was diagnosed in 2001 after 2 yrs. of seeing many, many doctors that thought I was crazy. It is nice to finally have a name to put with your symptoms. Good luck with your fight!

#6 by cathy on July 15, 2009 - 10:23 am

i was diagnosed with aih in november 2008 i am now on azathiaprine and not really suffering any side effects apart from not being able to loose weight despite cutting calories aerobic exercising and bike riding anyone else having the same problem?

#7 by Kathy on November 11, 2009 - 11:46 am

Hi! I think I have AIH. I am in the initial stages of being tested. It’s been a roller coaster these last few weeks. I have a positve AMS 1:80 (it was 1:40 last week) and all my liver enzymes tests are elevated. Besides that I have Sjorgen’s Syndrome. And now they found that I have lymph nodes in my right lung that are inflamed and a large nodule.

I’m a basket case!

#8 by Patricia Tamborello on December 13, 2009 - 9:10 am

I thank you for your blog. I have the illness, but am doing well. Diagnosed a year into it, but my U of Penn Doc is great and got me out of the spiral. Developed the illness at fifty -go figure the stats on age. On meds for life, but from the mouth of my doc, “I see a long life with that liver.”
Keep the spark
Plant the seed
journey the stars
Pt

#9 by Idamarie on February 19, 2010 - 3:50 pm

Good Afternoon, I was recently diagnosis with autoimmune hepatitis. I am having difficulty dealing with this as I have never been sick. Before, apparently contracted this chronic disease, I had a sinus infection, and the doctors placed me on Cipro- and 10 days afterwards and this is when the symptoms started to appear. Doctors keep telling this is a twist of fate, that this just happens- and there is no explanation of why I got this disease. However, still in my mind I am blaming the antibiotics. I have never taking any medications and the medications that are prescribed are making me sick. I vomit, cause all sorts of side effects, and leave me confused. Friends and family feel that this is not important and to stop talking about the disease and deal with. That is easier said than done. Especially, googling the internet and finding some distressing information.

How can I deal with something that I just got. The meds, the feelings that I am having, and the non support I am getting from others. I live in a state of confusion, and up and down depression

#10 by Jacqueline Childs on March 12, 2010 - 9:20 am

Hey John! I just wanted to thank you for you blog. I was diagnosed with AIH in 2008 (although my liver specialist says I’ve had it since I was 5). I will keep you in my prayers. I hope everything goes well for you in the future!

#11 by Nico on April 13, 2010 - 4:32 am

Hi, I have AIH and am on Prednisone and Mycophenolate. I was diagnosed eventually after a relapse, it was initially thought that I had Hep A. I am getting used to he medication after being on it for a few months, still have some side effects such as bone pain, swollen joints, fatigue but I do seem to be adjusting to it (hope for others). I have received conflicting info on how long I will have to stay on the medication, one specialist says for the rest of life another says 5 years! What do other people think? From info off the web looks like 80% chance I will cope without medication without having a relapse!
Interesting and informative site! Some sites just seem to be there to cause panic!

#12 by andy on April 19, 2010 - 6:07 pm

I am male, 55, and was diagnosed last fall. Liver biopsy came out ok==no fibrosis or cirrhosis, but the alt, ast and bil. were up pretty high. I resisted prednisone for a few months, hoping that the scores would come down. I also sought a 2nd opinion and was introduced to entocort. Been on that for a month and a half now and the alt/ast scores showed immediate improvement with bilirubin lagging (as it is wont to do.) BUT after feeling a whole lot better and largely free of joint pain, I am reexperiencing fatigue. Don’t know my most recent scores, so I am wondering if the entocort leveled off or if returning fatigue is just part of the AIH package…
Thanks for your postings and good luck to all. It’s a tough lot, but I am inspired by your strength….:)

#13 by Theresa Gately-Basinger on May 6, 2010 - 8:17 pm

I was diagnosed with AIH in Oct. 2009. My SGPT was 1400. I went to the VA clinic because I was crawling up the basement steps, vomiting , and setting in the front yard because I couldn’t get up. I had a Liver Biopsy, Ultrasound, and CAT scan. I was first put on Prednisone, which brought my SGPT down. I was tapered off Prednisone and put on Azathioprine, it only worked for 2 weeks Doctor said. I vomited violently for 7 straight days. I was put on Prednisone again plus Celcept. I was weaned off Prednisone again and have remained on 3000 mg of Celcept daily. I have felt normal since Jan. 28, 2010. I Just wanted to type my story so that maybe those people who are sick right now can know that some of them will get better. Patient Theresa Gately-Basinger Thank God for the VA

#14 by andy on May 30, 2010 - 5:26 pm

A follow-up. I have been on the entocort now for about two and a half months and I am thrilled to report that my lver enzymes have both gone down, with bilirubin heading in the right direction as well. The fatigue fluctuates but is definitely less acute than before and the joint pain is pretty much absent. I sometimes wonder if my profile is preciselt AIH because I only had a few of the symptoms, although my scores were quite high. I wonder if there are variations within the AIH profile.

Best of luck to all of you!

#15 by sandy villano on June 14, 2010 - 12:40 pm

Hi Theresa,
I’m 54 & was diagnosed with AIH in Dec. 2009. I went to my Primary Doctor for a routine physical & 1st time flu shot & found out my Liver Enzymes elevated. The ALT 885 & AST 383. After I was dignosed, I seen a Liver Specialist in PA ~ Jefferson Hospital. They reviewed all my Blood Work & Abdominal Utrasound & Liver Bisopy & they agreed that I had AIH. I was put on Prednisone & Azathioprine & my enzymes came down the first week to ALT 131 & AST 131. Now, it’s June, 2010 & my Liver Specialist is still trying to weaned me off of Prednisone. My biggest complaint is the fatigue & weakness. My Liver Specialist said when my liver regenerates new liver cells, I will feel better. When is that!! Never heard of Cellcept but I will talk to my Liver Specialist at my next office visit.

Thanks for the info.,
Sandy

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