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treatment for autoimmune hepatitis

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Posted 1/23/2007 12:25 PM (GMT 0)
 I am recently diagnosed and taking prednisone on a tapering schedule and azathioprine.  Anyone else receiving this

same treatment regimen?  The azathioprine causes nausea, weakness - will this subside.  Being told I have to be on it

for 4-5 years? 

thanks chrisVIEW IMAGE

Posted 1/26/2007 1:31 AM (GMT 0)
Hi Chris,
I have autoimmune hepatitis too. I am on a tapering dose of prednisone since my liver enzymes have come down. I couldn't take Imuran, (what you're taking with the prednisone), it made me very ill, and caused my enzymes to go up.
There are several of us on here that have AIH. I've been off the board for awhile.
I hope you will keep coming back for support and information.

If you want, share more about yourself, and how you were diagnoised.

Welcome,

Judy
Posted 1/28/2007 4:38 AM (GMT 0)
Hi Chris,
Welcome to the Forum,
I too have autoimmune hepatitis. I was diagnosed in May 2004. I take Prednisone (currently down to 10mg per day) (50mg at the start) and CellCept (a mycophenelate - used for rejection in transplant patients) as Imuran was not successful for me. Twice I have had a slight relapse and have needed to increase meds but each time the increase brings down the liver enzymes and things return to "normal!!" Doctors tell me I will be on both or one of these meds forever but I am hopeful that with chinese herbs and acupuncture I will eventually be able to say goodbye to these nasty medications. I also take Fosimax Weekly to counter the bone density decline caused by Prednisone and have recently been prescribed Lexapro (an anti depressant) after depression for the past six months.

Keep in touch. you'll find support here. It's good to share thoughts and vent frustrations.

Take care. Marg
Posted 2/20/2007 1:59 AM (GMT 0)
Hey Chrisnc,

I to am on the same meds and yes the higher you go on the Imuran the more nauseas and weakness you will have. When I went up on the azathioprine I could not get out of bed but my liver enzymes stayed the same if it still gives you trouble maybe you could ask the Doctor if their was another medication that would be better for you. Good Luck Hope you feel better
Posted 2/20/2007 4:15 PM (GMT 0)
Hi everyone
I am a new member. I was diagnosed with Chronic active autoimmune hepatitis six months ago after being misdiagnosed for several years. I am currently on prednisolone and Cellcept (Micofenolate mofetil) because I was unable to tolerate the Azathioprine.
My liver functions tests (LFTs) did normalize for a while but as I came down on the steroids to 5ml (was originally on 40 ml) my LFTs shot up again. I have had to double the Cellcept and increase the steroids but as yet my consultant has not been able to bring my levels down to normal although they are heading in the right direction but just very slowly. My ASTs have been over 2000 at times. I also have problems with bone thinning due to the steroids.

I have never been able to find anyone else who has this disease and would be grateful for any support and the opportunity to chat to others in a similar position.

Shirley
Posted 2/20/2007 8:52 PM (GMT 0)
Thanks to all who welcomed me!  I am off the azathiorpine as was vomiting it up along with prednisone so doesn't do any good.

My body wants nothing to do with it!  Back on only prednisone and have to go back to dr. this week to see about what to do.

None of the alternatives are any good either.  On prednisone I can function fairly well, sleep normally and have energy.

I was miserable on the azathiorpine.  Just ordered a book from Amazon, coping with prednisone, and what your doctor won't tell

you about autoimmune diseases  as I am looking for options!  Too scared to just taper off the prednisone and don't want to find

myself with liver problems or needing a transplant someday.  Briefly my history is hypothyroid, elevated ANA two years ago,

prescribed augmentin last fall for sinusitis which is a trigger for autoimmune hepatitis.  Obviously I probably have the genetics

as my sister has MS but really didn't need AIH. 

Please take care of ALL medications/ foods / supplements you use!!!  ALSO Melissa Palmers' book is good resource for this

take care, Chris  VIEW IMAGE

Posted 2/22/2007 10:05 AM (GMT 0)
WElcome Shirley,
We have many things in common. I was diagnosed in 2004, after finding myself in liver failure. I too take Prednisone (10mg now) and CellCept (tried Imuran first). I have had two major flares since 2004, when liver enzymes were way up there, but each time an increase in Prednisone has lowered the liver enzymes and currently they are almost normal. I'm hoping (got everything crossed that crosses) that next Wednesday when I see my heptologist he will allow me to lower Prednisone just a little.

I take Fosimax Weekly for my bones. My bone density has actually increased over the past two years (I have another test next Tuesday so we'll see if there has been another improvement), even though there should be a 3% decrease per year for my age. I'm 58.

Take care.
Looking forward to chatting with you regularly.
Marg
Posted 2/26/2007 4:39 PM (GMT 0)
Hi Marg
Thanks for the reply.
I am just coming down from my latest flare up which actually occurred after taking just one tablet of Alendronic Acid (which I believe is the same as fosimex.
My consultant does not think that it was the Alendronic Acid that caused it but my GP is not so sure. Anyway I have not taken any more but my Consultant wants me to try taking it again when my level are back down. She thinks it was coming down too low on the steroids that caused the flare up.
It will be great to have someone I can discuss all this with, especially as we are similar ages ( I am 56). Look forward to chatting again. Good luck on Wednesday. I see my consultant again on March 13 so should know more about how my level are by then.

Cheers
Shirley
Posted 2/27/2007 1:37 PM (GMT 0)
Welcome Shirley

I too have been diagnosised with autoimmune hep and was not able to tolerate the imuran. My levels have not reached normal since i was on the imuran and have decreased slowly. I guess these things just take time. At this time I am still on the pred and urso for the duct problems that have been predominent in my case.

Marge just a note to say I hope the doc appt goes well. Please keep us posted.

Lucy
Posted 2/27/2007 11:12 PM (GMT 0)
Isn't it great to have this support group. I feel better just knowing that's there are others with the same problems who I can turn to and chat with.

Thank you to you all. I had to change my appointment (now March 14th) because my liver ultrasound and bone density results were not definitely going to be available until Thursday.

Take care.
Marg
Posted 2/28/2007 11:58 AM (GMT 0)
Marg

Will keep my fingers crossed that your tests come back with positive results.
I totally agree that this forum is wonderful. I felt like the only person who was going through these things and now know that I am not alone.
Good luck and have a good day

Lucy
Posted 3/4/2007 7:17 PM (GMT 0)
 

I also have been recently diagnosed with autoimmune hepatitis.  Last August when I had a routine blood tests because I was taking Lipator and Hyzaar my doctor noticed that my liver funtions  were elevated.  I was told to stop all medication but they continued to go up.  I was then referred to a GI doctor and my levels continued to go up when they reached AST 480 and ALT 918 I was scheduled for a liver biopsy.  I had no other symptoms and felt fine during this entire period.  The doctor kept telling me I should feel ill but nothing not even tired.  The liver biopsy showed chronic active hepatitis suggestive of either autoimmune or medication induced hepatitis.  I was put on prednisone and the levels returned to under 100 and then weaned off 3 weeks ago now the levels are creeping back up.  I do not want to go back on prednisone because I felt awful while taking it and fine without it.  The doctors are not even sure if it is automimmune or if the prednisone or time was the reason they went down.  Has anyone else experienced this type of situation with autoimmune where there were no symptoms?  I am going to the University of Miami Liver treatment center for a second option later this month.  I keep thinking that it is going to go away and I guess I am fooling myself.  Has anyone tried any of the healthfood products like CoQ10 or Liv-52?  If so, any positive results?   Thank you for letting me vent.

Jerry1

 

Posted 3/5/2007 11:57 AM (GMT 0)
Welcome Jerry

This is a wonderful place to vent. I have found the people in the forum caring, compassionate and very willing to listen.
I too have autoimmune hep and had very little symptoms except for being so tired all the time. The fact that I had no symptoms except for elevated liver enzymes and fatigue seemed to slow down the progress of getting a diagnosis. Seeing a good hepatologist, in my opinion, is very important in getting a correct diagnosis. I have never taken any of the healthfood products you discussed, however there is another lady here that also has autoimmune hep that is taking alternative treatments along with regular medical interventions that may know about those or other products.

Please keep us posted on how you are doing.

Lucy
Posted 3/6/2007 12:16 AM (GMT 0)

Hi Everyone,

Thank you Lucy for the support since I am new at this it is nice to get a reply.  While I just got the results of my latest liver tests and they are up again AST 136 ALT 211 the doctor wants to put me back on predsione I have only been off 3 weeks and still have not lost any of the weight but finally lost the moon face.  I told him I did not want to go back on predsione until after my consul in Miami with the liver specialists.  He agreed but said they probably will continue to go up and in 3 weeks can be up to the 900's again and it will just take longer to come down again.  Has anyone's levels ever came down withour predsione?  Does anyone have drug induced hepatitis?

If so, how long did it take before the liver levels returned to normal?  The doctor is now thinking it may be autoimmune since it came down on steriods and went back up as soon as I stopped.  I was hoping it was from my medicine and would return to normal am I being foolish not to take the steriods?

Jerry1

mad  

Posted 3/6/2007 7:26 PM (GMT 0)
welcome Jerry, its totally a personal choice if you decide to take the meds or not, but maybe take them to keep your levels down,until you hear what the specialist has to say,,,,, then if its not necessary,or they find something else, you can discontinue the pred. I wouldnt think its good for the liver for your enzymes to get that high,and you want to avoid damage to it as much as possible.good luck
Posted 3/6/2007 11:43 PM (GMT 0)

Trish,

Thank you for your comments I guess you are probably right I just hate to start them again.  I was unable to sleep and I also have a heart condition which the predsione does not help.  I am unable to take anything to help me sleep since they are still not sure if it is medication induced hepatitis.  I am off all meds even for my blood pressure and cholsterol and the predsione raises my blood pressure quite a bit it has just now came back to high normal levels.  I guess it is just dammed if I do and dammed if I don't.  Is anyone on any other type of meds that help control the levels other than predsion because I seemed to have every side effect there is on that medicine.  

Thank you,

Jerry1 

 

Posted 3/7/2007 10:51 AM (GMT 0)
Hi Jerry,
Firstly, ask your doctor about cholesterol medication and liver disease. I think my doctor said I couldn't take anything for high cholesterol while my liver was unwell.
Secondly. I had no symptoms for such a long time, possibly 20 years the doctor has suggested. Then I became very tired, shortness of breath, large numbers of cold sores on my lips, mouth ulcers, muscle spasms in my feet and hands and occasional vomiting of bile. This was only a week before I became extremely jaundiced, and blood work revealed some form of hepatitis. Six weeks later, after exhaustive testing, AIH was diagnosed. PRednieone seems to be the only thing that keeps the inflammation of the liver under control. I also take CellCept to stop my body rejecting my liver. This medication is taken by transplant recipients. When my Prednisone is lowered (below 10mg) I flare up again. It has been almost three years since I was diagnosed.

I visit a chinese doctor every two weeks. I have acupuncture (to retrain my white blood cells to accept my liver) and take herbs regularly. I am currently taking Peony, Salvia, Cardamon and Isatis leaf (or root - I forget) for an outbreak of cold sores I had about three months ago. Cardamon is new in the past two weeks. Before that it was Magnolia with the other three herbs.

I'm hoping that the Western and chinese approach combined will enable me to taper successfully off Prednisone, or at least get it a little lower than the current dose. Like you, I hate taking it. My GP says it's horrible stuff, but at the moment it's all they have to successfully treat AIH. He says that in the years to come there will be something to replace it that has a much less harmful effect on your body.
Do you take something to prevent bone density loss? I am taking Fosimax Weekly and in the past three years my bone density has improved.

Glad you found the Forum. Lokk forward to exchanging posts with you regularly.
Marg
Posted 3/7/2007 1:29 PM (GMT 0)
Welcome Jerry
I am a relatively new member to this site too and have been made very welcome. I am just so grateful to find other people who understand what I am going through.
I have had Chronic Active Autoimmune Hepatitis apparently for many years and had many flare ups although it was only properly diagnosed about 8 months ago which is the first time I was offered any medication at all. Like Marg I now take prednisolene and CellCept. I started off on 40 mg of prednisolene and over the months came down to 5 mg only to have another flare up, ALT went up to 469 (quite good for me actually - but my consultant was worried). I had to go back up to 15 mg of prednisolene but am hoping to come back down to 10 mg soon. I don't think I will ever be able to come down any lower. Originally my ASTs were 2036 (very high). Being misdiagnosed for so long and not having any treatment has caused me to have fibrosis of the liver and every time I have a flare up this get a bit worse. Like you I hate taking the prednisolene and have many side effects and I used to fight the fact that I had to take it, trying to get down the lowest level possible. But.. it has slowly dawned on me that they are a necessary evil. I need them to protect my liver and stop the fibrosis from getting any worse or at least slow down the degeneration. The side effects do lessen over time, apart from the bone thinning which you can get medication for. The most important thing is to stop your liver becoming damaged or any more damaged than it might be already and the prednisolene does that.
I hope things improve for you soon.
Regards Shirley
Posted 3/9/2007 8:41 AM (GMT 0)
How wise you are Shirley. That is the way to look at it. We are fortunate there is a medication for us. Some diseases are not treatable at all. So I guess we should as you say, be glad for the small mercies and live life to the fullest, knowing how lucky we are.

While I am on my Lexapro I can think like this easily. I hope my positive thoughts and feelings remain when the antidepressants are finished. (about June).

Do you know what LD in the liver function tests refers to? It is my only number out of the normal range (apart from cholesterol)

Take care.
Marg
Posted 3/9/2007 8:22 PM (GMT 0)
Shirley

we are on same medications.  How are you tolerating the cellcept?  I am just starting and doing 250mg 2 capsules morning and

evening.  the cellcept could be making your LFT's go up as this is also a side effect of azathioprine

I am hoping I can tolerate this med.  otherwise just going to do prednisone alone for 18 mos and hope we can keep it LOW

right now i take 10 mg. 

Chris

Posted 3/9/2007 8:28 PM (GMT 0)

Jerry

so sorry about your situation.  I also became AIH through drug induced from taking augmentin!  It is toxic to the liver but of course I didnt know that.  I am told I have to be on medication now for 18 mos to 24 mos and then they would only recommend I come off if a liver biopsy shows no signs of hepatitis.  This is crazy   I am on low dose prednisone and taking cellcept as the azathioprine they usually recommend made me very sick.  I hope you get your LFT's under control. 

take care, Chris

Posted 3/10/2007 2:08 AM (GMT 0)
Hi Chris,
My dose of CellCept is double yours. I am taking 500mg capsules, two morning and night. Plus 10mg Prednisone a day. I had no adverse reaction to CellCept. I seem to tolerate all medications without side effects. I am really heartened to find a couple of people in the same situation as myself.

Take care.
Marg
Posted 3/10/2007 9:22 AM (GMT 0)
Hi Chris
I am doing fine on the CellCept. I went on it because I couldn't tolerate the azathioprine. I started off on 500 mg twice a day and got down to 5 mg of prednisolone and was doing fine until I started on the Alendronic Acid (I needed this because the steroids had caused by bones to start thinning). I just took one tablet 70mg, as you only need one a week but my levels shot straight up and I was very ill again. My consultant doesn't believe the Alendronic Acid caused it. She thinks it was coming down too low on the steroids but I had been on 5gm for several weeks before this happened. She wants me to start the Alendronic Acid again soon so we will see what happens.
Anyway after my levels shot up I was put on 1gm of Cellcept twice a day (2gm per day total). I take two 500gm twice a day. I seem to be OK on them. Unfortunately I also had to put the steroids up to 15mg again. I am seeing my consultant on Tuesday and I hope she will let me come down to 10 mg again.

I notice you all refer to your steroids as Prednisone whereas mine are definitely called Prednisolone, I assume this is the same medication and that perhaps we just call it something slightly different here in England.
Anyway, it is a real comfort to know that you are all available to chat with. After going through this for years on my own I feel so much better know that I am not alone in my confusion. Things do not seem quite so bewildering any more.
Shirley
Posted 3/10/2007 3:29 PM (GMT 0)

Chris,

Thanks for the information I to was on a strong antibiotic Levoquin in addition to 80mg of Lipator and 100mg of Hyzaar just prior to my levels going up.  Prior to that they were always normal I swear sometimes these doctors kill you with the cure.  I am sure that my AIH was kicked off with the medication but unfortunately did not go away when the medication was stopped.  I have read just about everything there is on drug induced and AIH,  in drug induced they say the levels peak at about 1000 and then start to go down after the medication is stopped.  I was put on Predsione before they reached 1000 but were close, they did come down on Predisone but not to normal.  I keep thinking that maybe they would have came down on their own if I was not taking the predsione.  Is it possible to be drug induced and the liver repairs itself and long term medication is not necessary or am I in a dream world?  After 6months I never had any symptoms of AIH and if my doctor did not tell me I was sick I would never know.  Thank you so much for everyone's comments it is so nice to be able to talk to people who are going through the same thing.

Jerry1   

Posted 3/10/2007 7:06 PM (GMT 0)
Jerry,

this is what I am being told. I have been seen by hepatologist at Duke U. Medical Center

Even though the augmentin is what "triggered" the AIH I supposedly have genetic predisposition to autoimmune diseases

as I am hypothyroid.  Of course none of my previous docs told me I had this predisposition or to be careful of drugs, foods,

supplements which can trigger a reaction.

My LFT's were approaching 3000.  Prednisone has brought me into remission according to hep but they will not leave me on it

for long term.  I started cellcept which is much better tolerated than azathioprine. It also comes in an ENTERIC pill but of course

no one tells us that either.  so far I am tolerating it with some minor dizziness.

Any of the immunosuppressants can cause LFT's to go up!  this is why sometimes they don't know if your levels are raising because

of disease or medication!  it is crazy.  also the dosage they recommend come from studies done on TRANSPLANT patients

not us having AIH for other reasons.  therefore could we get by with less???? I wonder? 

The hepatologist was treating 100 AIH patients.  they recommend azathiorprine first but he had 20 patients who were also

on cellcept due to not tolerating it.  Please read Melissa Palmers book on liver disease - great resource.

also website called UP TO DATE that physicians use.  If you buy a membership for a week you can get even More detailed info

that physicians get.  Lipitor is toxic to the liver as are ALL statins.  I now have high cholesterol due to prednisone, (LDL jumped

100 points) and was given welchol which works in the intestine to remove cholesterol.  Hepatologist thought is was fine for liver.

It is just SOOOOO many pills.  My life is revolving around when to take all of them! 

stay in touch, best of health,

Chris

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