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Autoimmune hepititis (AIH)

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Posted 6/7/2009 5:45 PM (GMT 0)
Hello,

   I just joined and I have had autoimmune hepititis for about 3 years now, at first when my doctor told me that I had autoimmune heptitis He also told me that about 80 percent of people get over it in about 6-12 months so I thought I would be the same, but as time progressed (and I had to stay home for 2 months while they diagnosed what it was) It was oviose that I was part of the 20 percent that might have it for my entire life. I was very depressed and went trough the gothic stage (lol) But came out and now im just happy to be alive and that I dont need  surgery to correct it. I just was trying to look up things tat might help me heal a ittle better and came across this website, I thought it would be nice to maybe talk to someone with the same thing, I would like to talk about or expierences and maybe some advice from our "cures"

Amber

 

Posted 6/7/2009 7:00 PM (GMT 0)

Hello, Amber, and welcome!  We have several members here with AIH, so I know that they will respond when they see your post.  I don't know much about the disease, except that treatment often involves Prednisone.  (Personally, I have Hep C and cirrhosis, and survived liver cancer.)  Are you on any treatments?

I'm glad you found us, and again....welcome.

Posted 6/7/2009 11:41 PM (GMT 0)
Hello,
Yes I am recieving treatment I am taking prednisone and Azathioprine, Sorry it took me long to respond, I left because no one was esponding I hope your right and people respond! Thank you
Posted 6/8/2009 4:13 AM (GMT 0)
Hi Amber and welcome to HealingWell. Connie is right we do have several members with AIH. Hopefully one will come on soon. But with it been a Sunday......I've noticed that the board is quieter on the weekends so they may not post tonight.

Glad you got through the initial depression. Education is one of the best things that you can do to fight this disease. And we do have members who are very knowledgeable about it.

Take care..........thoughts and prayers...........
Posted 6/9/2009 1:19 AM (GMT 0)
Ya just looking for someone to talk to, maybe they are going through the depression stage and dont want to talk lol! But its ok they can talk when ever
Posted 6/9/2009 1:47 AM (GMT 0)
Hi, Ferret!

I have had AIH since 2007.  My enzymes went in the 1600's and I developed jaundice.  I took prednisone 40mg daily for about a year, and had good results, but they gave me imuran, which made me throw up too much.  So then I got cellcept, which also causes nausea, but not as bad.  My Hep gradually tapered the cellcept, and I had the wild hope that I didn't need any meds, but the enzymes started creeping up again.  Rather than prednisone, I'm getting entocort, which is a steroid that goes right from the intestine to the liver and gets broken down there, thus having no overall body side effects.  Actually it gives no side effects at all!!!

Now I have normal enzymes, good energy level, but on going low grade nausea about 70% of the time. 

Have you had a liver biopsy?  Was it fun? tongue !!!

I got real depressed when I discovered that it all wasn't going to just go away after a couple of months.   But now I'm doing really well, and it is more of a background hassle. 

Please tell or ask anything you want.

Pix

Posted 6/9/2009 2:54 AM (GMT 0)
HI PIX,

Finally someone responding, Did you ever take Azathioprine? When I started out with my AIH my enzymes were up high too and I had to take about 25mg from the start but never 40 and my doctor has never mentioned those drugs you mentioned, The entorocort sounds nice I will ask my doctor about it at my next appointment, thans for the suggestion, I never want a liver biopsy the idea freaks me out, I've never been in surgery and I hope I never have to, But I have had a ultra sound and that was fun! Yes when my did'nt go away it was horrid and I too went through jaundice and while those 2 months passed and I had no treatment I was very tired and lost about 15lb but wen I started taking prednisone I gained it back and then some, But right now I am on 3mg and im feeling better and hoping it does not flare up again.

Thank you for responding

-Amber
Posted 6/9/2009 4:18 PM (GMT 0)

Hello Amber and Pix!

Pix, I think you've recently posted on the yahoo group, correct?  Everyone's been talking about the Entocort now!

I gather from what both of you wrote that neither of you have had a biopsy?  It is the definitive way for hepatologists to diagnose AIH and extent of liver damage, so I am surprised that you haven't had one.

I was diagnosed in January 2007.  I am currently only on Imuran (azathioprine) at 100 mg.  My pred was weaned off last December.  I have never had any ill effects from the aza so that's why I'm still on it.  There is a test they can do to determine the maximum amount a person can have or if they can even tolerate the drug.  (http://en.wikipedia.org/wiki/Thiopurine_methyltransferase).   I did start off at 40 mg pred and 1000 mg CellCept (it's a much quicker acting immunosuppressant).  When I was weaning off the higher doses of pred, they had me piggy-back the aza (then only 50 mg) for a couple of months (it has a slow onset) then I stopped the CellCept.  The pred wean takes a long time.  When I was stable on 5mg for 11 months, I started the 5 mg to zero wean which took 2 months.

Amber, do you see a GI doc or a hepatologist?  I am very surprised about the biopsy and the fact that you only started on 25 mg of pred.  How often do you see the doc and have blood tests?  What dosages of aza and pred are you currently on?

AIH is a life-long illness.  Some people are able to wean off medication but the relapse rate is up near 75%.  I am also surprised that your doc said it might just go away...unless you were overwhelmed at the time and didn't exactly understand and maybe wished that is what he/she was saying  cool    There are a lot of people on the Yahoo group that have great suggestions about handling your doc appointments...like bringing someone with you for a 2nd set of ears, writing questions out ahead of time and having your doc go over them, keeping copies of all your labs and those questions/answers, etc...

Personally I like coming to both groups but the Yahoo one is specific for AIH patients...with it being a rare disease, it's easier to have more frequent responses on a smaller group.  There's also a UK AIH group online.  There is quite a bit of info online as well.  Education is key when dealign with a chronic illness.  HealingWell has a couple of articles that are really good as well.

Take care and chat soon!

Posted 6/9/2009 8:50 PM (GMT 0)
Hi Ferret and Dany

Yup, it's me on Yahoo!

I have had a liver biopsy--it was the first thing the hepatologist did---I guess the little sarcasm (Was it fun??)  didn't come through in the post

I did know that the illness is chronic, I was just hoping.  My hepatologist is very good, IMHP, and I am a health care professional.  Unfortunately, I researched it "too much" and finally decided to just focus on healthful living and let the doctor worry about the medications and tests.  This has been a good plan, and my anxiety/depression level has gone way down.

Ferret, we are an active group, and I think the lack of posts is just a temporary thing.  Apparently the Yahoo group for AIH  has also been low on posts, too.  How are you doing?

Pix

Posted 6/10/2009 1:20 AM (GMT 0)
No I have not had a biopsy, I might be to young or something? But I think I have a more serious case of AIH than you because I have had my AIh since the beginning of 2006 and am just now on 3mg of prednisone and 100mg of Azathioprine, The Aza does not cause me any disconfert but I think the prednisone causes my constant stomach aches whuch are a drag.

Yes I have specialized doctor (GI) and he has been working with me for the entire time and has done well to help me wean of the prednisone

He told me there was a chance that I might be on a low-dose for my life or none and have to come in abut once every 3 months...right now I go in every month and get blood work once or twice a month depending on how well im doing.

My mom goes with me during my appointments and we always ask questions about resent things such as when my right side was hurting like crazy or why I have not got my period yet.

-Amber

P.S- Im scared to get a liver biopsy
Posted 6/10/2009 3:07 AM (GMT 0)
Amber, don't be scared of a liver biopsy.  It is not even as bad as getting stiches.  They use ultrasound (like an xray with sound) to see just where to get the biopsy, then they put a shot of numbing medicine in the skin over the liver which burns for about 3 seconds.  Then they do the liver biopsy itself with a needle, which doesn't hurt at all.  The needle is hollow, and the liver tissue goes inside and just comes out with the needle.  There are no stitches, no knives, and you are awake, but you don't have to watch unless you are curious.  Afterwards you have to lie quietly so your liver will clot peacefully, and then you go home and that;s it---no other pain or issues.   I was back in front of my karate class three days after the biopsy!!!!

If you want to know any more about any other specific information about anything I might be able to help you with, please ask.  Someone will know, and there are no stupid questions. 

Pix

I do think even babies get liver biopsies, so you might not be too young.   Each person's treatment is different.

Posted 6/10/2009 5:44 AM (GMT 0)
Amber,

As Pix said, don't fear the biopsy.  You should have had one, regardless of age...how old are you?  I would strongly recommend seeing a hepatologist.  Yes, the GI doc is a specialist as far as all things gastrointestinal are concerned but a hepatologist is a GI doc who has a specialty in diseases of the liver.  Just because you aren't off pred yet, doesn't mean you had a more severe case but perhaps your levels aren't stable yet due to the fact that your pred was only started at 25 mg.  Most people start at 40 mg or higher.  As far as severity goes, the doc would, truly, only know that after a biopsy.

There are some people who can't be weaned off the pred either and will remain on it indefinitely along with their immunosuppressants.  Do you have nausea as well as the stomach aches?  That's something the aza can cause.  Are you taking a PPI (proton pump inhibitor) like prevacid?  Prednisone will eat away at your stomach if you aren't protecting it.  The GI should have put you on something like that when you started the pred.  Are you taking extra calcium supplements and a multi vitamin?  Prednisone causes your bones to thin and you should have also been sent for a baseline bone density test.

Do you know what your current LFT's are (the ALT/AST, bilirubin, alk phos, etc results of your blood tests)?

I know, lots of questions!  It's harder to help you understand more if we don't know what your situation is. Feel free to ask lots of questions, here or on the Yahoo group...I saw you joined today!  Everyone there will ask you all of these and more I'm sure!! wink

Take it easy!

Posted 6/14/2009 11:40 PM (GMT 0)
Hi everyone, I am a new member. My daughter has AIH and UC. She is on prednisolone and 6mp (same as azathioprine). She is 7 and has had a liver biopsy. She sees a GI. Since she is young, her GI opted to put her to sleep while the proceedure was being done. Her symptoms were stomach pain, fatigue, poor appetite and then jaundace accompanied by tea-colored urination. We live in a remote area so there are no hepatologists. She was first diagnosed in Aug. 2008. When we go to the doctor I take a spreadsheet that I created showing each test result and if it was normal/high/low, a notebook that I write questions/answers/notes, and a calendar containing days that she wasn't feeling well/changed meds/weight/etc... We were told that she could not get a baseline bone density since she was so young and still developing. If she were an adult, taking a baseline would make sense because they have actual numbers to compare them with. We have been told that she will probably need to condinue her meds for life. I always ask the GI to put "cc: patient" on all blood work requisition forms so that the lab sends the results to me. I have a binder with the requisitions (I double check that the correct tests are marked off each time so that my daughter doesn't have to go back and get poked again), results, correspondance, and my research.
Posted 6/15/2009 12:46 AM (GMT 0)
Inygirl, welcome to the forum.  I'm so sorry that your daughter has AIH, but you are one of the most involved, organized persons I've come across on here.  You are doing exactly the right thing.  Ordinarily, I suggest that new members start a new topic to introduce themselves.  However, since there seems to be a nice little group of AIH folks on this thread, this should be fine.  I hope that others will take note of what you said and will learn from your organizational skills.

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