Autoimmune hepatitis

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blue pearl
New Member


Date Joined Jan 2004
Total Posts : 3
   Posted 1/1/2004 7:59 AM (GMT -7)   
Hi, I am brand new at this site let alone a chat room, I have just been diagnosed with AIH, It came on as a severe acute illness. Is there anyone out there with this kind of hepatitis that would like to chat? Blue Pearl
P.S. what are these icons for? do I have to use them?

littleone16933
New Member


Date Joined Apr 2004
Total Posts : 1
   Posted 4/18/2004 6:32 PM (GMT -7)   
Hey Blue pearl i have AIH too maybe we can chat sometime
littleone16933

blue pearl
New Member


Date Joined Jan 2004
Total Posts : 3
   Posted 4/27/2004 5:48 PM (GMT -7)   
Hello to you littleone,
I haven't checked this site for sometime as I have found another site just for AIH people. would you like the web site? is that cool to do here? I am really new to the forum thing.
I became acute with AIH in November 2003. It has been a long and winding hilly road. I am luckily in a good place at the moment, How about you? keep in touch, Blue Pearl.

beachlover
New Member


Date Joined Apr 2004
Total Posts : 2
   Posted 4/28/2004 11:21 AM (GMT -7)   
Hi to both of you,
I'm in the UK and the help seems limited??
What is auto immune hepititis???
I was diagnosed with hep C two months ago and i cant seem to find any help groups that are based in the UK. I would like some contact with others in the UK that have contracted geno-1 hepC
any Uk advice will be welcomed
Cheers and good luck
Beverley

Aunt Bea
New Member


Date Joined Apr 2004
Total Posts : 1
   Posted 4/28/2004 4:00 PM (GMT -7)   
Hi
I am new here I have some questions,I think I may have AIH the reason that I am looking into it id because I had severe hives and I have had a blood test that came back with high anti smooth muscle antibodies. There is a lot of autoimmune problems in my family. I would like to chat please someone get back to me.

Aunt Bea

Lndilew
New Member


Date Joined Jun 2004
Total Posts : 1
   Posted 6/16/2004 4:55 PM (GMT -7)   
Hello.  Here's my story, if you are interested in reading it.  I was diagnosed with AIH in Oct 2003.  I had Hep C (diagnosed a year earlier & had no treatment for it), but it somehow went away.  I had a very low viral load (1,600), but I suppose it is a miracle that the virus is not detected any longer.  After that I got the AIH diagnosis.  Anyway, the AIH is under control with prednisone.  I have 20-30% liver function, but have very few symptons.  So, now I feel like I have prednisonitis, not hepatitis.  You know how that medicine takes over your life.  I hate it.  I had made up my mind that I would get off it, regardless of the consequences.  I am on 5 mgs & will go to 2.5 this week.  I feel awful, but I am glad to be seeing some evidence of coming off the drug.  My dr. said a relapse would cause much liver damage, and a relapse would be likely if I stop the drug.  I really don't know what to do.  I don't want to die of liver failure, but this is certainly no life.  I feel like a monster (look like one, compared to my former self.)  I wonder how long it takes to lose the facial hair and fat deposits.  I think I am still sane.  Would like to hear from anyone who would like to talk about it.

roadster
New Member


Date Joined Jun 2004
Total Posts : 1
   Posted 6/24/2004 8:34 AM (GMT -7)   
Chin up I have been diagnosed with AIH and like you it's been a long haul. I was on high doses of pred whilst they got it under control and am now back down to 5mg/day. I also take Tacrolimus and have just started on Propranoiol (a beta blocker). I have steroid induced diabetes controlled by diet.
I have no idea how this condition started but am resigned to a life on medication and little or no beer. I was lucky that my consultant knows his stuff, I feel fine and am getting back to work and the liver function numbers improve at each blood test.
Ask about other drugs, (they are anti rejection drugs I believe) Tacro is expensive (good old NHS) but not everyone responds to one drug and there are others to try, I was no good on the first I was on and you need to be on the ball if you need to change as you need to be stabilised before starting another. Keep asking questions, don't just sit and accept everything Try and reduce your stress levels and eat well all the usual common sense stuff.

troyslisa
New Member


Date Joined Sep 2004
Total Posts : 16
   Posted 9/6/2004 9:45 AM (GMT -7)   
i never heard of AIH until now. this has me wondering my husband has been diagnosed with hep c viral load 1,491,000 he also has crohns an auto immune disorder .i wonder if his is gonna be AIH? what are the symptoms of that?or are there any?
 


eddie05
New Member


Date Joined Nov 2004
Total Posts : 1
   Posted 11/23/2004 1:13 AM (GMT -7)   
hi im ed05 i suffer from [AHI] im only 17 years old but ive had ]AIH] for 4 years ive matured alot and any one who wants to chat or find out more e-mial me at ed_05_510@yahoo.com

Lovableheart
New Member


Date Joined Apr 2005
Total Posts : 2
   Posted 4/28/2005 12:29 AM (GMT -7)   
Hello Everyone! I was wondering if anyone wants to talk. I am recently diagnosed with AIH. I had an acute attack in December of 2004. Spent a week in the hospital before they told me the news. So as you see I am really new to this. Would like to have as much information as I can get my hands on. I would like to be able to correspond with others that have this dreaded disease. I had my first biopsy last week and won't have any answers til next week Friday on it. I am just tired of feeling lousy. When my Dr. started me out I was on 30 mgs. of Prednisone and now I am down to 15 mgs. and feel terriable. So if anyone has any answers for me please feel free to let me know. Thanks

neworleans
Regular Member


Date Joined Apr 2005
Total Posts : 73
   Posted 4/28/2005 6:32 PM (GMT -7)   
eyes   hi everyone,
     I've been visiting the lupus forum and decided to come and visit here. I was diagnosed with AIH about 4 years ago. After a liver biopsy and multiple blood tests, it was finally diagnosed. I also have lupus, sjorden's syndrome, GERD, and fibromyalgia. AIH is an auto-immune disease based of the immune system not functioning properly and attacking one's own body. I think!! Just like lupus attacks the organs of the body. I have SLE not the discoid kind. I didn't know that you could get diabetes from steroids. I have a sister with juvenile diabetes. I'm the oldest of 5 children and we all have auto-immune diseases. I was diagnosed last and I'm 56. yeah I know that steroids are the pits but the alternative isn't pleasant. Ask your doctor for something to help with the side effects to the steroids. Have any of you all decided to take Paxil or Zoloft for help with all of the stuff you all are dealing with? I take wellbutrin and paxil and it does help quite abit to be able to deal with the stuff!!!!
I hope that this finds all of you happy and okay. I will try and read both forums and try and keep up with them both even after we move to New Orleans,La. Take care, neworleans!!!!! :-)
 
 

Lovableheart
New Member


Date Joined Apr 2005
Total Posts : 2
   Posted 4/28/2005 8:15 PM (GMT -7)   
Hello New Orleans,
  I saw your message and was very surprised to see someone post as I saw the time lapse between my message and the last one posted.
  Yes, if you are on strong steroids you can get what they call Steroid Induced Diabeties. When I am in the hospital for my lungs I always end up on insulin. Steroids if taken in large amts. can also give you steroid induced nightmares. These are terriable. I have had that happen to me twice and it is quite scarey.
  I am 50 years old. I am the only one in my family that has AIH. I have found out this isn't a plesent disease. Lately I have had alot of aches, pains, depressions ect. I don't know much about it as I am still learning and reading. I have read that if you have a transplant tho that it would take the AIH away tho. Is this true. Would like to be able to correspond with someone more knowledgable than myself about this. Each site I seem to go to more or less says the same thing. But at the same time not much. Hope to hear from someone soon!

mzbhavn
New Member


Date Joined Apr 2005
Total Posts : 1
   Posted 4/29/2005 10:23 AM (GMT -7)   
Hello, I am new here & have some questions. My Dr tested me for AIH this week & the results are not back yet. I started having problems in Sept. with a severe rash that wouldn't go away after seeing several Dr's they found no cause & said it could last 6 mos to 6 yrs that a lot of women my ager (44) get unexplained rashes-hives. Then about 2 weeks ago I got VERY ill ended up in the hospital & guess what all my liver functions were very high as well as my gallbladder not functioning proper. The Hep A, B & C tests are negative so off the a specialist I went for more tests. The rash went away during the 2 weeks I was ill I was still itchy all over &  now that I feel a bit better I see it's nasty little bumps starting to show  confused  . Also my skin burns, tingles, itches & feels at times like hot little needles are poking me (this has been going on since Sept.) Has ANYONE else had an experience like this prior to being diagnosised with AIH? Also are the Prednisone side effects horrible for everyone???
My symtoms were all classic with Hep A except the long term rash so my Dr. was surprised when it came back Negitive.  THANKS !!!!

BarbW
New Member


Date Joined May 2005
Total Posts : 1
   Posted 5/2/2005 8:10 AM (GMT -7)   

mzbhavn - I have autoimmune hepatitis, diagnosed about three months ago.  At that time, they said it was in the early stages, but I've had problems with unexplained rashes for years.  I have itchy skin, aching, swollen joints and sometimes almost crippling fatigue.  Also, I have been living with autoimmune thyroiditis since my early twenties.

My doctor has put me on Plaquenil instead of prednisone.  It has fewer side effects, but I have to have my eyes checked every six months or I can't get the prescription refilled.  This med sometimes causes lesions on the eyes.

You can get information from the autoimmune disease association and generally find a lot of information on the internet.  The hardest thing I've found to deal with is the limited number of anti-inflammatories I can take.  Both naproxene and ibuprofen can affect the liver, as can all the cox-2 inhibitors.

Since I've been diagnosed, I've found that my mother and at least one sister also have autoimmune diseases.  You can have more than one and you will usually find someone else in your family that has one or more, but not necessarily the same one as you.

Hang in there!


Little Lupie
New Member


Date Joined May 2005
Total Posts : 6
   Posted 5/11/2005 10:33 AM (GMT -7)   
I have Lupus, auto immune hepatitis, HBP, Portal hypotension, esophegal varices, diabetes and breathing problems, I have shrunk two badly needed inches in height and have very low platelets, red blood cells and white blood cells. I have to lose 30+ pounds in preparation for a liver transplant, thankfully I am down to 3 mg of prednisone. Of course when ever I get down I end up having to zoom back up, I am sure you have all been there. I have been very ill for last 15 months, not able to work or to function well at all, keep getting all kinds of infections and problems. I am very depressed and very tired all the time. I have wonderful caring doctors and a loving husband. I just didn't expect to become so useless so early, I am 54. God Bless you and thank you for listening.

neworleans
Regular Member


Date Joined Apr 2005
Total Posts : 73
   Posted 5/11/2005 8:42 PM (GMT -7)   
:-)  Dear Little Lupie,
    Sorry to hear about everything that you are dealing with and we all hope that you will get the transplant soon. It is easy for others to say that everything will be better soon when they may not live with what we go thru. However, these forums have been a wonderful support for me as well as the others and I hope that you find that as well.
    I understand how you feel because I am 56 and I never thought in my wildest dreams that I would have SLE, fibromyalgia, GERD, chronic active hepatitis, restless leg syndrome, and hypothyroidism and not be able to carry out everyday activities nor work.  I was a director of a Sylvan learning center and I miss it and the people I worked with.
 
    Also, if you have a solution to the weight problem, please let us know. I have gained a lot of weight because of the steroids and my depression over the whole mess. I am taking paxil and wellbrutin and I have found it does help. Are you taking anything for all of this?? You might want to try something to help you.
 
    My prayers and thoughts are with you, Neworleans   yeah

Hopes & Dreams
New Member


Date Joined May 2005
Total Posts : 2
   Posted 5/12/2005 9:37 AM (GMT -7)   
:-)  Hello All,
 
I am brand new to this forum. I have been dealing with AutoImmune Hep. since 2000 and its nice to know that I am not alone. If anyone would like to talk about AIH please dont hesitate to contact me here or email me at GillyBean143@hotmail.com.
 
I hope to here from someone soon.

Little Lupie
New Member


Date Joined May 2005
Total Posts : 6
   Posted 5/12/2005 2:02 PM (GMT -7)   
Thank you New Orleons, your kindness is much appreciated, meds I take plenty of, I tend to rattle as well as roll when I walk. Actonel,Prednisone,Protonix,Nadolol, Zetia, Lasix, Combivent,Lexapro, Trazadone, Lantus, insulin R, Darvon,Pottasium, Calcium and Iron plus vitamins.  I am having big trouble trying to get my extra 30 pounds off. MY diabetes is out of control and I have a hard time exercising . I just want to sleep all the time. I was the assistant manager in a military club and loved my work of 32 years. Now they refuse to have me back and disability says i am still fit to do less demanding work. Go figure.....Thanks again.

Hubb
New Member


Date Joined May 2005
Total Posts : 1
   Posted 5/25/2005 12:15 AM (GMT -7)   
Hi everyone,
I could really use some help here as my luck with doctors has been pretty rotten.  My liver counts have fluctuated up and down for almost a year now.  I had my gallbladder removed and it actually made it worse and the pain in my upper right abdomen is awful at times.  During those times, it feels like someone is squeezing my side like it feels when someone squeezes you above the knee.  That nerve pain feeling.  I have had every single GI test known to man but not one Dr. has pursued the elevated liver enzymes.  This last time about 3 weeks ago I was experiencing that right side pain and asked primary Dr. to run blood work.  The labs were normal except ALT at 155 and AST at 94 and also iron deficient anemia.  At times my bilirubin is slightly elevated but that was passed off as possibly being benign.  Also note there were labs that showed hypoalbuminia (sp?)(= low protein) with hypocalcemia.This cycle of elevated enzymes has gone on since last summer but there are times when I have no pain and the enzymes return to normal.  After this last blood test I asked Dr. for ultrasound as the last 3 MRIs this year only showed small 7mm cyst on lobe but nothing else.  I wasnt really in pain at the times of those MRIs so I thought the quick ultrasound during a time of pain would help.  The report came back as such: "Liver is in upper limits of normal size, slightly prominent (16cm).  Minimal liver parenchymal hypogenicity raises suspicion of mild or minimal diffuse liver parenchymal disease. Suggest LFT correlation.  No other significant abnormalities seen. Cystic structure on MRI is not well seen on ultrasound."  Let me translate "Ouch, my liver hurts and its swollen." Also the pelvic ultrasound showed multiple ovarian cysts but no worry, just had biopsy of one a few months ago and had gyn adhesions surgery that came back cancer free. Ok, so I was tested last summer for Hep A, B, C and was told negative.  Epstein Barr virus IgG was positive but mono test was negative.  Told aches and pains from CFS but Im not always sick, frequently though I get arthritis type pains where I can barely move, that horible side pain, itching.  Also I am being seen by a kidney Dr. because some of those results were off like aldosterone and I lose potassium and calcium to the point of paralysis if I dont maintain supplements.  I have an appt with a Hepatologist at Hopkins in Baltimore this Tuesday.  Ok, my question is - is it me or does this sound like autoimmune hep?  or is there anything else that would do this to me?  The only drugs I take as needed are Xanax(and thats after the pain starts), ibuprofen which I now have stopped, and my supplements of calcium and Rx Potassium.  It seems to me this started after a bad reaction to a sulfa antibiotic last year but its hard to say.  I also get most of my pain and problems following my monthly cycle and want to know if that has any correlation to any hepatitis flare-up or could it be that I tend to take the ibuprofen around that time and it irritates what I already have.  I could really use some help here.  I have been sick so long and since it is all on the inside, people and Drs are getting frustrated with me and want to give up.  My ALT and AST have been elevated at least 6 times that I know of this past 10 months many times to well over 100 and sometimes closer to 200.  Why is it so hard to get somebody to believe how much this hurts?
Thanks, Lisa

Little Lupie
New Member


Date Joined May 2005
Total Posts : 6
   Posted 5/25/2005 3:37 AM (GMT -7)   
Hello All, We have so many unanswered questions, that seems to be a common theme. I spend a lot of time looking up my diseases to get answers and then present my findings to my doctors, so they can yea or nay them, That way I feel as though I am participating in my care and understand it better.  Nothing was more frustrating than previous doctors who were unresponsive and unwilling to share information. One lousy doctor even suggested it was all in my head, I never went to him again. I was misdiagnosed with "the Change" and put on premarin which made me very ill, didn't go there again. If your doctor won't talk and doesn't understand your pain and frustration, then he is not the right doctor for you. God Bless and Good Health, Little Lupie

angel42
New Member


Date Joined Jun 2005
Total Posts : 1
   Posted 6/5/2005 7:33 PM (GMT -7)   
Hi, I have been told I have autoimmune Hepatitis. As with all of you my Dr did not know what was wrong with me either. All hepatits Viruses came back negative, So my Dr said it was just a case of Imflumation of the live. Finally I had a liver biopsy done and it comfermed I was in liver failer and had AIH. I am currently on Prednisone 15 mg, and Imuran. although the Imuran is causing Nausea, Vomiting, and Diahrea. I have not taken the Imuran for the past 2 days. Is wrong for me to do this. I have talked with my Dr and he doesnt really say to take it or not. He did say he would give me another drug, but I have no insurence and I have to go through the patient assistace program, that could take a few weeks. in the mean time my liver levels were ok but all of a sudden they appear to be going up slightly, is this normal. I have found some info on AIH on the internet and am so glad to have come across this sight. If there are other sights please someone email them to me. angel34@ruraltel.net. I am so scarred at this point because I have no insurance, I was basicly told when diagnosed that I would not beable to get a trasplant if I needed one because of no insurence. I have 2 children and this terrifies me. God Bless you all.

scarlette1126
New Member


Date Joined Jul 2005
Total Posts : 1
   Posted 7/22/2005 7:34 AM (GMT -7)   
My 8 year old daughter was diagnosed with this disease April 2005. They started her on 50mg of prednisone and 25mg of imuran. She is now down to 15mg of prednisone and 25mg of imuran. She has to go every two to four weeks for blood work to check her liver enzyme levels. She had a liver biopsy back in April 2005 and has another biopsy scheduled for September 2005. She did not have the disease until she had mono back in 2004 after that her spleen enlarged and her liver enzymes went into the 500's. Her liver enzyme levels are normal now but yet they keep her on prednisone. Does anyone know when the side effects especially the moon face go away? She wore a size 6/6x and in just 3 months now wears a 10/12 and has this almost cartoon looking round face. She is so miserable. She does not recognize herself in the mirror. Has anyone else gone through this????????????

Little Lupie
New Member


Date Joined May 2005
Total Posts : 6
   Posted 7/22/2005 7:54 AM (GMT -7)   
Roseanne, my sympathies on your daughter getting this terrible disease so young. Prednisone is infamous for it's side effects, but they go away when she goes down on dosage. Trouble is that you cannot just stop taking prednisone, you have to go down gradually. God Bless, Little Lupie

DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/25/2005 12:51 PM (GMT -7)   
Welcome, Hubb!

I'm so sorry to hear about all of your troubles. As Little Lupie mentioned, finding the right doctor is sometimes very difficult. We started out in the VA system with my fiance, but were lucky to find several great GI's and internists.

I really don't have personal experience with this form of hepatitis, but I've been doing some reading. Since there are a few possible causes for what you're going through, the article I found said, doctors need to do tests for autoantibodies, to confirm autoimmune hepatitis. I didn't see that you'd mentioned having those done.

There are people here who have a lot of experience with this disease, so keep asking questions.

Let us know how things are going. You have a lot of support here.
DJ


DesertJules
Regular Member


Date Joined Mar 2005
Total Posts : 142
   Posted 7/25/2005 1:01 PM (GMT -7)   
Welcome, Angel42!

The side effects of some medications seem worse than the disease, I know.

From what I've read, the Imuran helps suppress the immune system and lowers the amount of Prednisone that is needed. It's possible that the side effects you're having are more related to the Prednisone, and it might be an idea to ask the doctor if they can adjust your meds.

As with any medication, it's not a good idea to change the dosage without direction from your doctor. My fiance is a transplantee being treated for Hep C, so our bathroom looks like we've got our own pharmacy. The balance of meds is a really tricky thing.

I wish you only good luck. Keep asking questions - there are great people here with a lot of knowledge.
DJ

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