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Posted 7/27/2009 1:18 PM (GMT 0)
I have just been Dx with autoimmune hep the doc just told me over the phone and I will meet with him 10 august. My liver biopsy and the blood tests showed that I have this disease.

I am not really worried I have so many diseases before this hehe..

Can anyone tell me what to expect ? My doc will put me on imuran and Pred to begin with.

I want to have kids one day I hope, how has that been going for you girls who have AIH?

What is life like with AIH can your exercise and work? My doc is now keeping me from most activities and it is getting a little boring ;) though I am so tired all the time that I mostly sleep all day, though I would like to work out. My doc said I should not be lifting things over 22 lbs.

Is life with AIH boring, cant you do anything are you always tired or with so bad joint pains that you cant move ?

All info would be nice.

I have searched the older forums and found something but I would like to know more
Posted 7/27/2009 6:29 PM (GMT 0)

Hi and welcome!  I believe you posted here previously when you were unsure what was wrong with your liver.  It's good that you got a diagnosis and have started treatment.  According to Dr. Melissa Palmer, in her book Hepatitis & Liver Disease, agressive treatment in the first 3 years usually prevents AIH from progressing to cirrhosis.  It is cirrhosis that causes problems.  She also states that severe, active AIH can cause women to stop menstruating.  But with treatment, periods return and pregnancy can be achieved.  Since it is believed that there is a genetic component to AIH, it is possible that you could pass it on to any children you might have.   I see nothing other than that regarding pregnancy, so I think you will be able to have children.  Keeping up treatment, getting enough rest, and doing everything you can to become healthier in the next 3 years, should assure that you have a life span equal to that of the general public.  There are other diseases associated with AIH, including UC.

I have hep C, not AIH, but I know we do have members here with AIH who can hopefully give you a more personal picture of what it is like living with that disease.

Best of luck to you and please feel free to post whenever you like.

Hugs,

Connie


Posted 7/27/2009 9:07 PM (GMT 0)
Thanks for the reply :) I know that there is a 10% change that i pass UC/CD to my children and probebly the same with AIH. I will have to talk better with my doc about this. It seems so selfish for me to have kids.
Posted 7/27/2009 10:04 PM (GMT 0)

I don't think it would be selfish.  It's a very minimal risk.  Most of us have family medical histories that can possibly be passed on to our children.  Even without that, there is always the risk of having a child who is handicapped in some way.  So it's something to weigh and talk about with your doctor or a future husband, but right now just concentrate on taking care of your own disease.  It's even possible to reverse it.

Hugs,

Connie

Posted 7/29/2009 6:21 PM (GMT 0)
Hello, I was dx with AIH in 93. I had to children about 5 and 9 and worked a full time job. The biggest thing I remember at first was the pure exhaustion. I slept all the time, lost work and needed help with my children. It took six months to dx me. It was more rare then, at least in New England. I to was put on Imuran and pred. The pred turns into a nghtmare. I hope your doctor is telling you of the weight gain depending on the doasage. Mine was 60mg. daily. It's not just the weight but you bulk up like a football player. I remember the swelling. You deal becaause you have to. Eat healthy and excersize when your not sleeping I don't want to scare you in anyway. Just want you to make a list of things you should discuss with your dr. Every case is different. I was 30 and mainly healthy. It was after years of pred that everything starts happening. My liver would not respond to the meds and it has been almost 16 years. I am down to 5mg and still hopefully dropping.
about having children, defintely do as much homework as you can on this disease as you can. I became pregnant and had to abort due to the meds. It was the hardest thing my husband and I had to go through. So wait and find out if your liver does well on treatment. Again mine did not.
The book they suggest is a good start. It is older so I am not sure how up to date it is. Even though not much has changed in treatment over the years. I go to Mass General in Boston which is one of many liver transplant centers. I feel I have a wonderful Dr. there and really listens and tries to make things as easy as possible for me. The best advise for you right now is take care of yourself to the fullest. Be happy, eat right , exercise and that is the best treatment out of all. I have been out of work now since 97 and I find plenty of things to keep me busy. I just had my first grandaughter. So life does go on as it should.
Good luck and God bless you, Cindy
Posted 7/29/2009 7:40 PM (GMT 0)
Thanks Cindy

I also have Ulcerative Colitis so I know how pred treats you :S I get the worst moon face in the world.
So I was not sad that I had AIH but I was said to go back on pred :(

Have you been on Pred now for 16 years? are you still on Imuran ?

I will of course talk to my doc about having babies, would not want to do anything to hurt my unborn child.

Good luck to you also.
Posted 7/30/2009 1:11 PM (GMT 0)
Yes, I am still on Imuran and pred. I also am  on a very low dose of prograf, which is used in transplant patients. But they are finding low doses help those who don't respond fully to just the other meds. My Dr. is weining me off pred. I am down to 5mg. I am excited and hopeful that this will work. Long  term side effects of pred. are not good. And I suffer more from those then I do the liver. When this started they gave me 5-10 yrs. before transplant because of the rapid damage to my liver. But it has now been 16 yrs. and I am still not needing to even be on a list. So I feel I have accomplished a lot. Keep in touch and let me know if I can help you in any way even if it is just to talk. I have been through so many other diseases due to the long term of my meds. So try not to worry, stress is one of the things that can hurt your body and your healing process. Live life to it's fullest and enjoy the things that you have and not the things you don't. Family and friends are great support. Talk soon. Cindy
Posted 7/30/2009 5:45 PM (GMT 0)

CJ, welcome to the forum!  Your experience with AIH is invaluable to those here with the same disease.  I think you raise a valid point:  Even if you can have children, will you be able to care for them?

Long-term use of Prenisone can cause tiny stress fractures throughout the spine and other bones.  It is the number one cause of avascular necrosis (AVN), also known as osteonecrosis (ON)...literally bone death.  I have AVN and have had my hips replaced because of it, and will soon have a revision on the right--but not due to Pred.  (They say it's from heavy drinking in the past, but I'm not so sure.)  I only took Pred. once and had a psychotic reaction, so if I should ever need it they will have to come up with something else.

Hugs,

Connie

Posted 7/30/2009 6:02 PM (GMT 0)
Connie,

Thank you so much, I am a little leary about telling people my whole story due to the fact it isn't really good. I wouldn't want to put any doubt or bad thoughts into anyone because they will hopefully have a different outcome. My full experience with AIH has caused so much other problems for me. Actually I should say pred and other meds to counter react what pred has done to me. But I still try to keep my head up and keep on living my life the best that I can. But there are days when I can't even get out of bed.

Cindy
Posted 7/30/2009 6:50 PM (GMT 0)

Cindy, for those suffering with any type of liver disease, they (we) need to hear all sides, not just the horrible outcomes and not just the good ones--but all of it--in order to get a complete picture of what is possible.  Since liver disease is such an individualistic disease, every case is different.  However, there are certain things that are common to all.  After reading many, many posts and other material, we can get an idea of what is possible.  When I was diagnosed with liver cancer, I was not really surprised, as I knew that it was a possible consequence of long-term hep C.  I was hoping that it wouldn't happen, but knew that it was possible.  What I hadn't read were any good outcomes or survival statistics.  That is one reason that I post here and tell people about my experience, since I am still here and cancer free after 2 yrs. 2 mos.

I know that Prednisone is commonly used for inflammation, but I truly wish they would come up with something that is equally valuable but without the awful side effects.

Hugs,

Connie

Posted 7/30/2009 7:40 PM (GMT 0)
 

Hi All,

I have not posted in a while but always check the new posts.  I was digonosed with AIH 3 years ago and have been in denial for most of that time.  I was very lucky and my AIH was caught early because I was having blood tests every three months because I was on Lipator.

I have had 2 liver biopsies which have showed no scaring and mimal inflamation.  I have been on and off Prednisone for most of that time.  I was sure that my liver levels were elevated for reasons besides AIH, I thought it was my gallbladder which has since been removed, etc.  During this time I would continue to drink socially because I thought it would not affect my liver since my AIH was cause by medication especially the Lipator.  I cannot take any type of medicine which is not good since I have a heart condition but unable to tolerate statins of any kind.  I take a low dose of blood pressure pills but need the prednisone.

I currently am taking 1200 mg of Urso I cannot tolerate Imuran and was just weaned down to 5 mg of prednisone and again my numbers are starting to go up.  I have no other symptoms and never had so that is why I was so sure I was misdignosed.   Well I guess I need to face facts and stop the social drinking so maybe someday I can get off this prednisone.

MJ

 

Posted 7/30/2009 10:29 PM (GMT 0)

Good to have you posting, Jerry!  It definitely would be in your best interest (and that of your liver) to quit drinking alcohol altogether!  Just substitute a sparkling water.

Hugs,

Connie

Posted 7/31/2009 8:34 PM (GMT 0)
 

Connie,

You are right and I have made the decision that to continue any kind of drinking is too much of a gamble.  I am going to have my blood done in another week and hoping my levels have not gone up again its seems so hard to get past the 5mg.  I am also taking the Urso my hep doc feels that even though it is not usually used for AIH since I cannot take Imuran that it may do some good so far have not seen any difference from just taking predisone or taking both.  They also recommended Milk Thistle which I was very suprise they are highly respected Hep doctors at the University of Miami Center for Liver Disease and are up on all the latest meds.  So I am also trying that too maybe it is working since I was drinking and my levels were normal until the latest bump of AST 36 ALT 49 which I know is still good. However, from past experience when they start going up they continue until I go on a higher dose of Prednisone.

So no drinking.

Jerry1 

Posted 7/31/2009 10:19 PM (GMT 0)

Jerry, congrats on your decision and good luck with your levels!  I think that milk thistle is pretty widely accepted now for use in liver disease.  I took it when I was first diagnosed and it didn't do anything for me.  However, the info that I had said one needed to stop drinking carbonated beverages and only drink distilled water.  I just wasn't able to follow that.

Take care.

Posted 8/2/2009 12:39 AM (GMT 0)
Jerry,
It has taken me 16 years to get my levels to where yours is. So I am glad to hear that you have stopped drinking. It is only the best thing you could do. Remember that no one else can help you get well until you want it yourself.
Be proud of yourself.

cj7
Posted 8/3/2009 4:42 AM (GMT 0)

Isergodur,

I have AIH...was diagnosed Jan '07.  It hasn't stopped me from doing anything.  I consider myself lucky.  I walk in the Breast Cancer 3-Day annually (I was diagnosed a couple of months after my 1st 3-Day)...for those of you who may not know what that is, it's a 60 mile walk for breast cancer through The Komen for the Cure foundation.  I have also not stopped working at all (only the 2 days when I went in for my biopsy).  I responded to the prednisone right away.  They started me on pred and CellCept initially as I had a severe initial attack.  Once stable I piggy-backed imuran (azathioprine) for a couple of months since it takes that long to kick-in then dropped the CellCept.  I was fully weaned off the pred last Dec and am still very stable.  Next bloods are in Sept and only see hepatologist next March (my longest stretch --1 yr-- without seeing him!).  My initial hepatologist warned against getting pregnant as they are not going to wean me off the imuran ever for fear of relapse (not to say I don't whilst on meds) and pregnancy can cause relapse.  However, she said she wouldn't say never.  I have one child and even before AIH didn't feel the need to have another.  If you and your doc decide it's best for you not to have any children, there's always adoption as there are many who need good, loving homes.

You can have the test to see if you can tolerate imuran (I didn't but many others have...they test for TPMT).  You should request a baseline bone density test as well.  They will likely put you on a proton-pump inhibitor to protect your stomach from the prednisone.  You'll also need to take additional calcium +D and a multi-vitamin...discuss all that with your doctor.  Bring a list of questions and a note pad to write the answers down.  Get copies of you lab results...ask as many questions as you need to.  Sometimes people bring a friend with them as you may miss something.  Also, are you seeing a hepatologist or a GI?

Jerry, please stay away from the social drinking or drinking of any kind.  I understand denial but there's so much you are risking and alcohol is sooooo not worth it.  I used to indulge socially as well (prior to AIH) and initially it was hard getting together with people for 'happy hour'.  So I started drinking Shirley Temples to feel like I had a drink and I would smell everyone else's drinks...was kinda funny actually.  Anywho, I have water with lemon now and am happy I spend less and save those calories in case I want to nibble on something!

Also, Jerry, have they tried other immunosuppressants for you since Imuran didn't work?  There's CellCept and Cyclosporine...I know others on them.

Take care all!

Posted 8/19/2009 7:37 PM (GMT 0)
Hi all,

I'm new here ... newly dxed with AIH within the past month. I hate the pred! My feet, ankles, legs, stomach and face are always swollen. My feet swell to the point of numbness and that disturbs me but, the ER doctor assured me the other night that it is all the pred and there is nothing that can be done. GRRRRRRRRRR! I called my liver specialist who advised me that he wants me to be vaccinated for HEP B. Huh?! If I'm at such a high risk of infection from contagious diseases, etc. why would one want to inject me with a contagious disease?

I'm on ativan to help with the mood swings from the pred and a dieuretic that seems to do nothing. The pred and dieuretic have my glucose levels shooting through the roof (650 on Sunday night) so I'm now on insulin and I'm stressed to the max. I had lost 30lbs since this all started in March and now I'm told I can put that unwanted weight back on. NO THANK YOU!! I've been out of work since July 3 with no point of return to work at this stage. I'm not one to sit around and do nothing but that is exactly what I have been forced to do since this started.

I'll continue reading in this forum to learn even more about AIH and what seems to work and what doesn't work.
Posted 8/19/2009 7:50 PM (GMT 0)
Hi Crone

I also have AIH and the same thing happened to me with the pred and the high sugar readings.  I was diagnosed "drug induced diabetic" I was also put on Insulin.

Once the pred was reduced (very gradually) I was no longer a diabetic.

YES, you NEED to get the Hep B shot, actually it is a series of shots, and you should also see if you need to get the Hep A shot.  They actually have a combo A & B shot, so if you need both get the combo.  I was told to get it because if I were to get Hep A or B on top of AIH that would not be a good thing. (Acutally, my Dr. (Mr. Personality) said I would die. 

He likes to scare people into doing things, it worked, cause I got the shots.

Watch what you eat, and drink plenty of water. If your sugar is that high you should be wearing a medic alert necklace or bracelet.  That way if you have a problem people would be able to help you asap.

It is not an easy journey hang in there.

Regards,

Rhonda

Posted 8/20/2009 3:02 PM (GMT 0)
Well just got latest blood test only went down slighly on 15mg prednisone Dr. increased to 20mg which raises my blood pressure so heart doctor gets upset.

I have did try Imuran when first diagosed in 06 but had very bad reaction cannot get an answer from Hep doctor in Miami about Cellcept but I need to try something else so I can take heart meds.  My heart doc wants me on a beta blocker also but I am afraid to try anything new since I have no idea what caused latest flare up.

I stopped Ursotoday (did nothing) and Milk Thistle and only on fish oil, blood pressure meds, and prednisone.  Has anyone found diet make cause flare up?  I am thinking about going to a nutionist? 

I also had the Hep A&B vac Hep doctor said safe to take I have had 2 so far.  It is a series of 3.

MJ

Posted 8/21/2009 1:35 AM (GMT 0)
Jerry,
Sorry to here that you are having a flare up. I know it really sucks going up and down on pred. On your medication do you use any generic meds. Or the real stuff like Imuran. I know that I had a bad reaction to generics. So my doctor puts only the regular medicine on scripts.
I have also never been told to live on any special diet before. Now I am a pred. Diabetic so I do have to watch everything I eat. Hopefully as they wein me down that will change. My sugar was almost 600.
I hope your doctors can find something that works. Cellcept worked for me for awhile but I still had to have pred. You need to get your Doctors to work together with a plan. It is very hard to do that, I have been very lucky in that aspect. I also have never had a problem with milk thistle or fish oil. You might have jumped the gun on those and they are all natural compared to your other drugs. I hope the best for you. But you need to get your Doctors together or find yourself a really good mediator. Good luck and I will watch your posts and try to keep up.
CJ7
Posted 8/21/2009 2:17 AM (GMT 0)
Hello, Had my new labs on 5mg of pred. They are staying stable so here we go down to 2.5. It has never happened. I would like to stay positive about this only everytime they try to get me off I get this far and everything goes crazy. I am really scared, if it doesn't work it's back up on pred. to get me stable again. It is such a rollercoaster ride. Sixteen years now and I am so exahausted! This has to work so I can get off the insulin and end the diabetic nightmare. I ache so much with my OA and Tendonitis, Muscle weakness, muscle cramping everywhere, legs twitching, sleepless nights.
I always wonder why me. I was a good kid, stayed out of trouble, unlike my brothers who both are reformed Alcoholics (thank-god). But I am the one with liver disease. It has gone to the Cirrohsis stage. I am a drug store.


Meds-- Imuran, Prograf, Prednisone, Cymbalta, Insulin 2x/day, Synthroid,
Klonipin, Singulair, Advair, Fluid pill.
Multi Vit, Calcium-Vit D, Milk Thistle, Iron


I was also wondering how isergodur is if anyone has heard from her. I haven't seen any posts.
Thank you cj7
Posted 8/21/2009 1:46 PM (GMT 0)
Hello CJ7, Just wanted to let you know that isergodur posts mostly on the Crohn's Disease forum here on HealingWelll.

Sorry that you are having such a tough time. Just continue to get educated and keep coming here for support..........We are here to help one another. The communication with others who know exactly what you are going through and understand completely is invaluable.

Thoughts and prayers...........
Posted 9/2/2009 5:27 PM (GMT 0)
 I was diagnosed a year ago this October after having a liver biopsy. I have had fluctuations with my liver enzymes since 2000. After having a couple of ultrasounds throughout the years my doctor thought  maybe I had fatty liver. The biopsy was to determine if I had  fatty liver or NASH (the bad kind of fatty liver) so both my doctor and I were surprised when the pathology read AIH.

Currently, I am not on meds because I have no issue (thank God) with any type of cirhhosis but I do have to see a liver specialist every 6 months.(My doctor said the side effects of the meds would do me more harm right now than the disease but there is a good possiblity in time I will be put on Predisone and Imuran.

I was told the worst case senarios and it does not sound like something I want to find out about so I just take one day at a time.

 

Posted 9/2/2009 5:37 PM (GMT 0)

Chooky, I just wanted to welcome you to the forum.  It's fortunate that you are not symptomatic.  Enjoy being that way as long as possible! 

Connie

Posted 9/2/2009 7:10 PM (GMT 0)

Hi Chooky,

When you say your enzymes fluctuate...what are the numbers?  It's rare they let patients with AIH avoid treatment so I assume they are very low and fluctuate in the normal range at times?  The premise behind treatment is to avoid future damage and risk of developing cirrhosis.  So it's great you aren't cirrhotic now.  I'm not either but the damage I incurred initially was severe and I had to be put on pred and immunosuppressants.  I'm currently only on Imuran.  The side effects of the meds are after chronic long term use.  If you get off pred, that's one you don't have to worry too much about.  The increased risk of cancers with immunosuppressants are generally after 20 or so years of use...and it doesn't mean you'll definitely develop it either.  I prefer medication to taking the risk of developing cirrhosis but I didn't have much of a choice with that one.

Jerry,

sorry to hear about your flare.  I do always worry about that and life has been stressful lately so I've been trying to remain calm.  I have a regular check-up with the hep tomorrow, had bloods drawn yesterday, so hopefully all is well.

Re: Hep A & B vaccinations...we need to have them!  It would be most terrible to contract one of those viruses with having AIH as well.  They are killed vaccines so there is no risk of developing it from the actual shot.

In regards to the urso...it's my understanding that it's a bile acid so it wouldn't actually serve as an AIH treatment unless the bile ducts were affected in the damage from AIH.

I wish you all success in your treatments.  I'm always sad to hear when someone can't get off the pred.  It's a wonderful life-saver but has soooooo much bad with longterm use.

Chin up everyone.  I always think that it could be much worse and that's why I try not to complain too much...but venting is super helpful so I do and encourage it but in the back of my mind am happy I have this disease over another.  A friend of mine has been battling very aggressive breast cancer for the past 4 years.  Last week they found it spread to her brain and she had surgery on Monday to remove it...she's only 35.

Good luck and speak to you all soon!

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