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treatment for autoimmune hepatitis

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Posted 3/10/2007 7:15 PM (GMT 0)
Shirley,
It is not the alendronic acid probably the cellcept raising your LFT's . Azathiorprine can do the same thing. IT is really a guessing game.
They can't tell if it is the disease or the medicaiton causing the problem.
Your dosage it what I was recommended for eventually but since I am so sensitive to any medicaiton I am starting off slowly with 250 2 capsules
twice a day. It is much better than azathiorprine. If you look up the manufacturer of the drug this is dosage they recommend for liver, heart,
kidney transplant patients. they do not have studies on using it for immunosuppresion for AIH yet.
I am hoping 18 mos. of this and then I want to consider coming off all. My prednisone is at 10mg. Hepatologist thought I was in remission
as all levels way down to normal or below. Prednisolone is a form of prednisone.
take care, Chris
Posted 3/11/2007 12:48 AM (GMT 0)
Shirley,
There is some difference between Prednisolone and Prednisone. My doctor prescribed Predisolone once the the pharmacist noticed the difference and phoned the doctor then changed my script to Prednisone. Don't know why some of us would be one medication and some on the other. But it's a strange illness!!

Take care.
Marg
Posted 3/13/2007 4:03 PM (GMT 0)

Hi Everyone,

Well I received my latest test results yesterday and they are up again AST now 166 and ALT 269 my doctor feels since I am so close to going to the Center for Liver Disease on the 27th he is not going to put me back on the predsione until they give their opinion.  Hopefully, I will be able to finally have a diagnosis and know exactly what I am dealing with and what should be the treatment.  Yesterday I asked my doctor why I had two completely different result from my liver biopsy.  One from the hospital said I had Stage II Grade II which means on a scale of 1 to 4 my fibrosis or liver damage is moderate.  On the biopsy from the Cleveland Clinic where they sent the slides for a further consultative opinion stated they was no fibrosis at all which is characteristically present in all cases of autoimmune hepatitis.  Now you can see why I am totally confused since no one can agree on what type of hepatitis I have except for ruling out viral.  My doctor said if he had to go with one biopsy he would believe the one from the Cleveland Clinic since they have an outstanding record even though they are not sure whether it is autoimmune or drug induced which are treated differently.  I will keep you posted on the results for the Liver Center and what they find and there proposed treatment.  Luckily I live very close to Miami and have access to this Center I understand they are one of the best in the country for liver disease.

Jerry     

Posted 3/13/2007 11:10 PM (GMT 0)
Hi Jerry,

 

I have read many of your posts and wanted to comment that 15 yrs ago I suffered from jaundice and it was pretty bad.  I also became pregnant at that time as well.  They called it medication induced jaundice but never gave it a name as far as hepatitis.  I was told that Motrin was the culprit and had lots of blood tests but NO MEDICATION because I was pregnant.  I also had hypothyroidism little did I know that 15 yrs ago I had autoimmune hepititis.  The jaundice eventually disappeared and my liver enzymes went down to normal it took two years.  I never had any problems until the year 2000 with a rash and  itching, fatigue, and was then diagnosed with Epstien Bar Virus that was not quite true I had autoimmune hep.  I still was not put on any medications.

 

In 2005 I was misdiagnosed with cancer and lupus another mishap.

Last April as all I did was sleep and felt fatigued really bad I knew something was aweful wrong I decided to go to the hospital and was admitted for autoimmune hep/cirrhosis end stage.  I currently take prednisone and Imuran weening off the prednisone.  I am in the end stages of Liver Disease and it will go down hill from here.  When they did your biopsy part of your liver could have fibrosis and part of it may have been clear that would explain the differences in opinions from the two different pathologists.  If this is the case you have a very good chance of stopping the cirrhosis part of the disease.  All kinds of things can and will make your liver enzymes go up especially meds......read all you can and do not take anything that you do not half too meaning herbs and supplements without checking with your Doctor always ask you Doctor what effects if any will any new medications have on your liver.  Stage II is not bad really.  I wish you the very best hang in there it will get better.

 

Cheryl

Posted 3/14/2007 3:32 PM (GMT 0)

Cheryl,

I am so sorry to hear that you were misdiagnosed for so long and ended up with end stage liver disease, are you on list for transplant?  I do no take any meds from the time they suspected autoimmune they stopped all meds I did have to take amoxicillin a couple of times in the last few months for dental problems since I have to pre med for all dental work.  I have not taken anything without my doctor's knowledge but it does not appear to have any affect whether I take something or not they still go up.  I also have a heart stent and should be on cholesterol and blood pressure meds but unable since they cannot decide if drug induced.  Even so I guess it would still be autoimmune.  I currently do not have any other autoimmune issues or systoms.  My hepatitis was found very early since I was having blood test every three months since I was on 80mg of Lipator.  

I guess it all depends on how good our doctors are since they control the treatment.   If I did not get routine blood tests I would never have known about the hepatitis until it was very bad since I had no reason to think I was sick.  My husband still believes it is going to go away since I feel fine he cannot believe it is anything serious.  That is why it is so good to be able to talk to everyone here since they understand the problem.

Jerry1

Posted 3/28/2007 8:58 PM (GMT 0)

Hi All,

Well I finally had my appointment with the Center for Live diease in Miami.  They still have to review my biopsy slides but said it looks to be autoimmune hepatitis from the blood tests results and other information I brought with me.  The good news was they felt it was in the mild stage without any liver damage since it was caught early.  The treatment is the dreaded prednisone.  The doctor also mentioned a drug they have been having some success with it is called Ursodeoxycholic acid has anyone taken this drug or heard of it.  The doctor said after looking at my biopsy slides they will decide if I can try this drug instead of prednsione.  The drug has been used in Japan with good results. She said it has very few side effects but they usually treat autoimmune with prednsione for a least a year.  They they repeat the liver biopsy if no inflamation then they start to wean you off.

Jerry 1

Posted 3/29/2007 10:43 AM (GMT 0)
Jerry

First I am so glad that you are finally getting some kind of information regarding what is wrong with you. I too had to wait for nearly three years before I was given a diagnosis. This disease obviously must be difficult to determine. I have taken Urso for the nearly two years. Most of the damage that has been done to my liver has been in the bile duct system which this medication is suppose to work for. Unlike the Imuran or the prednisone I have had no side effects from it at all with the exception of a slight tummy upset if I dont' eat around the time I take it. My only complaint with it at all has been that it is somewhat costly even with perscription insurance.

Again am so gald that you have some answers. The unknown is so much worse than what actually is in most cases.

Lucy
Posted 3/29/2007 2:36 PM (GMT 0)

Lucy,

Thank you so much for the information about URSO I hope I can take that instead of the prednsione.  The doctor said that they have some good results in lowering liver enzymes my are now AST 360 ALT 611 the doctor said they are not that high and I can wait a couple of weeks for them to get all the results before they decide on the medication.  I thought that was pretty high now high to they get before they consider it bad?  

I guess I am lucky l was diagnosed so quickly I know the doctor told me in most cases there is severe liver damage before it is ever discovered because so people like me have no symptoms.  I guess I have very good doctors who caught it right away.

I will keep you posted when I hear back from Miami on the treatment and final diagnose.  Thanks again for your support.

Jerry1 

Posted 3/31/2007 9:20 PM (GMT 0)
Hi Marg:


which kind of chinese herbs are you taking, can you share it with us? Is the acupuncture is working and making you feel better?

I have AIH too.

Joanne
Posted 4/1/2007 3:04 AM (GMT 0)

Hi Everyone,

Well I received the final diagnose from Miami and it is chronic automimmune hepatitis.  The Dr said I probably had it for quite a while because there was a lot of inflammation Grade 4 not sure what that means.   She said the Fibrois Grade II.  She prescribed prednisone and imuran 50mg n 30mg of Prednsione for 1 wk then 20mg for 1 wk then 15mg for 2 wks then 10mg to levels are normal.  When they stay normal for 6 months they want to redo liver biopsy if no inflammation they will try to wean me off.  I read all the side effects of imuran and it is scarey I noticed quite a few people on this board have not been able to take the Imuran has anyone been successful with it.  The doctor said I have to have CBC blood tests done every 2 wks while on the Imuran.  I am satified that it is autoimmune and that now I just have to deal with it and work on getting better.  She said there is no reason I should not live a normal life as long as I take the meds because she feels the condition is in the mild to moderate range.   They feel I  had an underlying autoimmune condition for quite a while and the meds I was taking just kicked it up.  Maybe a good thing otherwise I would not have realized that my liver was being damaged.

I want to thank everyone again for all your advice and comments it sure helps to share.

Jerry1

Posted 4/1/2007 3:49 AM (GMT 0)
are you going to U of Miami?  I live in Hollywood, just diagnosed.  I need a good dr.

Posted 4/1/2007 12:21 PM (GMT 0)
Jerry

There have been several people on here I think that were able to take imurna successfully. I just was not one of them. When I go back to the hepatologist in April he is looking at alternatives to the Imuran not sure what those are at this point. Am glad that you have the answers you were looking for and can now educate yourself on how to deal with it. The not knowing for me was worse than the diagnosis.

Good luck and keep us posted.

Lucy
Posted 4/1/2007 2:43 PM (GMT 0)
 

 Itsme,

Yes, I went to the University of Miami Sylvester Cancer Center that is where the Center for Liver Diease is located.  The director is Dr. Schiff you can also find info on the internet about the liver diease center.  You have a couple of months to wait for an appointment and the more information you can bring or send to them the better.  I was having difficulty getting a final diagois it was between autoimmune and drug induced from Lipitor.  I went for a second opion, I thought they were great everyone was helpful and friendly and all they deal with is people with liver problems. I understand they are rated as one of the best in the country.  I saw Dr Mendes who works for Dr Schiff because I did not want to have to wait until May to see him.  She was very good.  There is Dr Schiff and five other doctors.  They gave me the diagose which confirmed my GI's and gave me a medication schedule to follow and can be monitored by my doctor since I live in Palm Beach County.  I can go back there whenever it is necessary or continue with my doctor. 

God Luck.

Jerry1 

Posted 4/1/2007 10:37 PM (GMT 0)
Jerry :

I've been taking Imuran for 9 years, I respond well to it. I'm dealing with alot of fatigue now, and not comfortable around my liver.

Joanne
Posted 4/3/2007 2:12 AM (GMT 0)
Some pt's have nausea (particulary in the morning) when they are medicated with Imuran, but there are sever other immunosuppressants that can be options (depending on your other meds).  In response to your earlier question, Ursodeoxycholic acid or Usodiol is a deoxycholic bile salt (not fat soluable) and is a pretty old drug, and commonly used.  It has several protective properties to the hepatocyte, and has no med interactions, except for bile sequestrants (Cholestyramine, Cholesevelam)  Urso is commonly prescribed for drug induced hepatitis as well as many other hepatic disorders... hope all is well
Posted 4/3/2007 8:56 PM (GMT 0)
MDchronie:
are you a Dr.? you seem very knowledgable.
I have a question for you? when I was diagnosed with AIH 15 years ago, I was between stage 3 and 4, that is mean cirrhoses. My AIH is in remission now.
my question is: even though it is in remission(no longer active), I will still need transplant down the road because I have cirrhoses, or I can lead a normal life like how I did these 15 years. I'm 36 years old now, My labs are all normal, CT scan is normal so far.

I appreciate answring my question, or any one else who have knowledge about this.

Joanne
Posted 4/5/2007 2:06 AM (GMT 0)
Has anyone with Autoimmune Hep. ever taken Cellcept as treatment? I have been on prednisone for 5 year and my doctors feel it time to take me off. I have tried Imuran and 6MP but have had bad reactions to each. They are stumped as to what to do so he sent me to a rheumatologist and he want to try Cellcept. does anyone have any good/bad information? Side effects? I have also developed osteoporosis and right hip bursitis due to the prednisone can anyone offer any suggestions for the pain? <!-- List Question -->    
Posted 4/5/2007 3:20 AM (GMT 0)
Joanne, yes...MDchronie is a medical doctor. I hope he sees your post and has an answer for you. I'm not a doc, but was told that my liver function is too good to be considered for transplant. You said that your liver function is good, too, despite cirrhosis. Nobody can predict what may happen in the future, but I feel safe in saying that if you continue as you now are, you will not need a transplant. I have an acquaintance with cirrhosis and hep C (she took treatment for a year and is now cleared) who is working full time and raising her daughter herself.

LilacLuv, Prednisone is the leading cause of avascular necrosis (AVN), also known as osteonecrosis (ON.) This is a condition in which the blood supply is shut off to the bones and they literally die and collapse. It normally occurs in hips and knees (I have it in hips and have had bilateral hip replacements and 2 revisions on the left.) This was not due to taking Prednisone, though. I know other people who have tiny hairline fractures throughout their bodies due to Prednisone use, as well as osteoporosis. You can try moist heat for the pain. I don't know if you are allowed to take any medications or what you can take, so you need to discuss that with your doctor.

Good Luck!
Connie
Posted 4/5/2007 9:02 PM (GMT 0)
Thank you Connie for the respond. That was very helpfull. I have an appointment with my GI in May, I will ask him alot of questions, and that is one of them and I will post what he sayes, other people may have the same question too.

How are you doing Connie? I hope you are felling healthy today?

Joanne
Posted 4/6/2007 9:20 AM (GMT 0)

joanne123 said...
Hi Marg:


which kind of chinese herbs are you taking, can you share it with us? Is the acupuncture is working and making you feel better?

I have AIH too.

Joanne

Hi Joanne.

I have taken a few different herbs since commencing my visits with Dr. Chen.  Currently I am taking (in pill form), peony, salvia, cardamon and isatis leaf (or root).  The latter being for cold sores which I had for about three months and nothing I got from the regular doc made any difference.  Two weeks on the isatis wahtever and i have not had another cold sore in about three months.

Prior to this I also took magnolia and balpeurah (something like that). At all times I am taking four different herbs.  He changes them around a bit depending on what he feels prior to my acupuncture.

I'm not sure if this treatment is working. Since I am also taking Prednisone and CellCept it's hard to say what is causing the improvement.

What I can tell you is that since I have been on chinese herbs and acupuncture, (about 10 months) my blood results have become normal and have been stable for the past four months.  My Prednisone has been decreased from 15mg to 9mg in this time. 

My Liver specialist seems to have an open mind on this, which is unusual.  Not many Western doctors are prepared to give alternative medicine a go.  As long as I have a blood test if my chinese herbs change, checking that no change has occurred, he is prepared to admit that this alternative treatment may be helping.

I belive it is. 

Marg

Posted 4/6/2007 9:26 AM (GMT 0)
LilacLuv said... Has anyone with Autoimmune Hep. ever taken Cellcept as treatment? I have been on prednisone for 5 year and my doctors feel it time to take me off. I have tried Imuran and 6MP but have had bad reactions to each. They are stumped as to what to do so he sent me to a rheumatologist and he want to try Cellcept. does anyone have any good/bad information? Side effects? I have also developed osteoporosis and right hip bursitis due to the prednisone can anyone offer any suggestions for the pain? <!-- List Question -->     Hi LilacLuv, I have been on CellCept for 18 months now.  things are going well.  My liver enzymes are almost normal (everything but LD).  i have had no side effects.  I still take Prednisone.  CellCept replaced Imuran.  Imuran was supposed to enable me to wean Prednisone but this did not happen.  With CellCept I have dropped from 15mg in Mat 06 to 9mg Feb 07.  I'm very pleased with this improvement. There are others who have takeb CellCept.  I have not heard of any bad reactions to it. Hope it works for you. Marg
Posted 4/6/2007 12:29 PM (GMT 0)
Thank U Ma rg57! I have to go & pick up my prescript ion for Cellcept this afternoon, Im not sure of the dosage. I have been nervous about it because of all the terrible side effects from the prednisone and the horrible reaction to the Imuran but I have my fingers crossed that this will balance everything out or at least help enough so I will be able to reduce my prednisone. Has anyone been dignosed with burtsitis of the hip brought on by prednisone? I have and the othropedic doctor says physical therapy should help but the rhuemtologist says it will do no good. Has anyone had any experience with this??
Posted 4/7/2007 6:54 PM (GMT 0)
Thank you Marg:

Yes it is so great to have people to discuss this dieases with, since it is so rare, there is people in the medical field that never heard about it. Amazing!!!!!!!!!!!

Joanne
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