My 15 year old son came down with Pneumonia last June. He seemed tired all summer. Started pulling out of it and getting energy back in the fall. Took him outside our HMO to get his a Dr. slip approval for Basketball as it was a 3 month wait at HMO. The doc we went to noticed he had retention of fluid in lower legs. Was concerned. Said we should go see regular doc and INSIST on blood tests. Assigned dr. at hmo wasn't thrilled we had gone outside system, told us he was healthiest kid he had seen all week. We insisted on blood tests, they came back low wbc count. 2 months of tests later, we are at the G.I. who says we need a liver biopsy. Comes back micronodular cyrossis or a AIH diagnosis. Its been a surreal round of doctor appointments and blood tests and ultrasounds, biopsie etc. His ALT levels were at 285.
They put him on 40Mg a day of predisone (he has gained some weight, his face is swollen and red, he's moody) and Imuran (a generic has just hit the market thank god, which lowered the cost from 175 a bottle to 10.).
We just got back from doctor who says after 3 months on current meds, his ALT is down to 40! We are starting the step down process on the Predisone, with hope to keep him on 20 mg every other day after we step down over the next 2 months. Keeping imuran a constant.
The whole thing seems crazy. I'm convinced the Pneumonia kicked this off, but the other thing is he's deveoped Asthma, and a sinus issue that lasted all winter long.
So my question is, does or has anyone who has AIH, had pneumonia before the diagnosis, and/or developed a secondary lung issue.
I know that AIH is in the same family as Lupus, MS, and Rhemetoid arthristis. A woman I know with Lupus told me she developed bad asthma and eventually emphesema. Maybe this seems like I am trying to borrow trouble when I have enough but I want to stay on top of this and thought I would ask if there was a connection.
The Following User Says Thank You to zelphiablue For This Useful Post: luyingjie (01-25-2012)
I have always been healthy. About 2 years before I got sick with AIH, I had pneumonia twice for the first times. Now I've been constantly sick with colds and such. But that could be from my low immune system now. Tina
The following user gives a hug of support to vamp36: luyingjie (01-25-2012)
The Following User Says Thank You to vamp36 For This Useful Post: luyingjie (01-25-2012)
I have 4th stage PBC and 3rd stage aih, with 4th stage cirhossis from the two diseases overlapping... my liver works at 20% capacity right now, but that is enough to keep me from being listed...LOL i also had outrageous numbers in the beginning with a 2268 ast and alt and alk phos in the 1000 range, billi was 22.6! Prednisone and imuran are the protocol.... prednisone is rough stuff. they only give it to you if the billi is high! there is life after these numbers... mine have all returned to a near normal range.... none the less the damage is done and so a transplant will be done at some point.. my advice is go to a good hepatologist, take your meds and have a healthy and positive attitude!!
The Following User Says Thank You to OhioMOM For This Useful Post: luyingjie (01-25-2012)
Here's my testimony. 43 y/o male, s/w ohio area, before aih - general good health (husky big framed guy), live in a rural area raising thoroughbred horses from 1997 to present (never know. . . may find some link), married, 3 children from 16 to 10 years of age. Been on BP meds for about 6-7 years. Oh yea, sinuses most of my adult life - a curse for most living in the Ohio river valley area.
Starting the 4th qtr 2001 started loosing my energy. Pain in the a** to go to work plus my other chores at the barn twice a day. In Dec. 2002 we went to the doc attempting to diagnose my moodiness and low mental spirit as something Zoloft could take care of. About mid-Jan 2003 my wife started getting concerned of the yellow eyes. Went to doc our GP doc again, urine strip was out of control, went to hospital immediately for blood work, had the high enzyme #'s (1500 and 1600). Put me on antibotics for a week with order not to go to work. 1 week later no change in liver #'s. Went in hospital 3-4 days for testing (led by my GP doc). Throughout the "normal" test he couldn't find anything. For some reason he felt compelled to order an "ANA" test - something he's never done - this test came up positive. Shot me through the MRI and did a liver biopsy. Sent the results to University of Cincinnati and passed me onto them. I went on a prednisone regimine to get the immune system back into control, then slowley wienned off of that and ramped up on the immuran. Currently on 150 mgs of immuran (250 lb body) and been on 6 month visits ever since I think the start of 2004.
So far so good. Got a visit coming up in a month or so. The specialist doc has mentioned that, if I wanted to try it in the future, to possibly wien me off the imuran. Think he said something like about 20% sucess rate. Too early to make that decision, and if I have no sucess, could lead to more fibrosis. Also, I think he determined that my liver sustained either lever 1 or 2 damage. He's real satisfied with results, as he both speaks this and his facial gestures indicate this also. Life has gotten back to somewhat normal - don't have the energy I used to - probably 80%.
We'll I've got to run - go to work. I was compelled to do some aih surfing and came across this site. I squeezed as much as I could into a 1/2 hour of typing. ALL AIH'ers, hang in there and remember to take your vitamins - a multi and calcium. I'll come back later for more research.
The Following User Says Thank You to aqb10 For This Useful Post: luyingjie (01-25-2012)
sounds like you are doing ok..... cincinnati has a good hepatology program.... i couldnt take imuran. it put me in the hospital for a week. now take cell cept instead. it is easier for me to tolerate. i hope to keep the tx as far into the future as i can.
what stage cirrhosis are you? it will state that in your biopsy!!
Without pulling my records up I can't say, however, I remember the doc stating the fibroses damage had just started. For some reason I've thought of my level of fibroses as "surface rust". As I have gotten older, I try not to worry about things no matter how serious - do what I've got to do and press on.
The following user gives a hug of support to aqb10: luyingjie (01-25-2012)
by the way, people with cirrhosis must be careful with multiple vitamins. i just attended a conference where both pbc and aih discussed.... the best doctors in the country were there..... too many minerals in your vitamins can be harmful to your liver. when the liver does not work well, i guess the minerals will build up. ADEK are the hardest vitamins to get. they are fat soluble and as such, are not processed by the liver. your doctor may need you to supplement those with ADEKs that are processed by the kidneys
I was diagnosed with Auto immune hepatitus when I was 10 years old. I was jaundice and very thin. I was put on 40 mg Prednisone. Now I am on Ursodiol and azathioprine. My liver counts from my blood tests go up and down throughout the year. Do you have any other stomach/gi problems as a result of your disease? I have had some over the past year an a half.
The following user gives a hug of support to starrynightgurl: luyingjie (01-25-2012)
The Following User Says Thank You to starrynightgurl For This Useful Post: luyingjie (01-25-2012)