autoimmune hepatitis

Hi Emmi,all prescription drugs can do harm we could never suspect. I'm glad your dr. caught everything in time. I don't drink either but I have severe advanced cirhosis & hepatic encephalopathy due to prescription drugs.Mine is not going to get better becuse the Dr. I had did not moniter me . Nobody caught it until I went into my first comma. Sounds like your Dr. got you in time.As far as auto immune I don't know. Even tho the encymes are high side of normal is good that it is still in normal range. But please always keep your appts. for any & all tests.This way if they go higher your Dr. will be able to care for you. Don't know if this helps but I hope it does.God bless.

Hi Emmie,I'm glad your enzymes are not horrible,Please useCaution when you resume your meds. Liver disease isn't worth the risk trust me. I also have other health issues involving pain,but I find alternative methods to deal with it. I'm always around if you want to talk about anything. take care & god Bless. later....

Sorry I spelled you name wrong emmie.

My liver enzymes and albumin are still not in all in the normal range but thye are so much better than when I was in liver failure in May 05.  

Marg

Autoimmune diseases are difficult to diagnose and treat in the first place. They hide, and mask themselves and are vague. When you have multiple autoimmune diseases, it makes the diagnosis and treament even more difficult. Then, each person has different body chemistries, allergies and sensitivities, so different treatments are more effective for different people and they take a shorter or a longer amount of time to work.
That said, it is unfair to compare one persons illness, treatment and experience to another. It is fair to share your experience with your illness, treatment, and experience.

That said, prednisone is the standard for treatment for autoimmune diseases. It has ugly side effects - thus the Fosamax that Marg57 is on.
When I was diagnosed with Autoimmune Hepatitis in 1995 with no apparent cause, this is the path I followed:
I learned as much as I could about the disease. At the time there wasn't much information. So, I went on prednisone. ICK. One year later, I was refered to a doctor with a specialty in Hepatology (liver) and my medication was changed to an immune system suppresant that is given to organ transplant patients - Imuran. There are side effects to this medication also, but they are less severe than the prednisone. I have to go on Prednisone when I have flare ups.

The point - research - find a specialist who knows about your specific illness - the liver and autoimmune disease.

Three years later I was diagnosed with another autoimmune disease - Hashimoto's Thyroiditis. Because my doc was familiar with autoimmune disease, I was prepared for this and knew it when I was hit with the symptoms. Because I researched the illness, I knew what to expect from the doc and the disease - I still haven't found the right doc for me though!

When I've looked for new docs in the past, I've always looked for docs familiar with autoimmune disease - even my gyn knows how autoimmune disease affects me regarding my reproductive cycle and my rheumatologist does too. It's all because I'm informed. I take a huge part in my disease - know about your medications, your bloodwork, ask questions, and understand what this disease will mean to your life, your work, your family and your body.

Emmi - your numbers coming down will depend on you - you need to take care of your body - don't put any toxins in your liver, rest, etc - ask your doctor about the meds he has you on - are they the best for you - when does he expect to see results in your numbers? How much damage will be done to your liver if the numbers don't come down sooner? How will the SLE an anemia affect your liver disease? Did they cause it or did the medications you were on cause it? What can be done to avoid it in the future? These are the questions you need to be asking. There are alternative methods to helping with pain, instead of medications and they are best to using medications - remember the liver - avoid toxins in, but with your complicated conditions, that always cant' be helped.

hugs,
linda

Just checked in here and once again I'm struck by the kindness of everyone on these HW forums. thank you so very much for all that information everyone. I try to do exactly as you suggested. Linda, because the autoimmune family of diseases is so very complicated. I am blessed to have access to great medical care at a university hospital. My rheumie is considered an "expert". But best of all, she is a good listener and keeps up with all the latest etc.

The latest on my situation: my Liver counts are down low enough that she allowed me to resume one medication I take for two of the other diseases. She increased the dosage of cellcept, an immunosupressant. We are in the process of ruling out another autoimmune disease that is diagnosed by doing just that: ruling other causes for symptoms out! There are a couple of criteria that are usually, but not always, found in this latest possibility. I have 2 of the 3; haven't been tested for the third and hope I don't need it! As usual, very little black and white, but lots of gray!

Thank goodness for the internet and access to research and for all of you who are so willing to help and support each other. All the best to you! Thank you!

xoxo emmie

Emmie,

The other diseases you're dealing with - the lupus, the scleroderma, the sjogrens and the Hashimotos, seizures, and the Raynauds - you're not taking meds for any of those at all? Wow - talk about suffering! It seems to me that the hormones for the Hashimoto's (I have that too) shouldn't affect the tests for any of the other diseases = or your liver - especially since the liver doesn't process hormones!

And i know that the meds for Lupus, scleroderma vary - and that sjogrens and Raynaus can really be a side effect of the first two and that you can sort of treat those with out meds - kind of. But to not treat you for the lupus and the scleroderma - that seems odd to me. I hope you can keep your other symptoms at bay.

It's great that you have a good relationship with your doctor - I had such a crappy GI at first - "nope, prednisone for the rest of your life - that's it - that's all I can do..." When I moved to PA and found my new GI, and she showed me the 6 month old study with Imuran and signed me up with her STAFF nutritionist to help take off the 50lbs I had gained on the prednisone - I thought I was dreaming! I have such high standards now for docs, they're hard to find!

I'm on the Imuran now, and have had normal tests for years, but take a huge handful of meds to keep the rest of me going - that includes supplements.

take care.
lindak

Post Edited By Moderator (Admin) : 1/29/2006 10:01:12 PM (GMT-7)

Wow - second time I've heard of AVN - there's a girl on the another  boards with AVN - not steroid related either. Sounds like a tough disease - I'm always positive about what I go through because I know there's someone out there who is suffering more than I. When my docs post prednisone heard I had been on it - they were very pro active in making sure to find out what damage had been done - I was very fortunate that I was safe. And I've only had to be on it once or twice for flare ups - my main complaint is the food cravings - I'm overweight already - so weight is a serious issue with me. So, I'm only on it until the numbers go down, then I wean off right away - and my docs knew it. Right now I'm searching for a new GI - I'm so picky it's hard!

Linda

Post Edited By Moderator (~Jennifer~) : 1/30/2006 2:32:07 PM (GMT-7)

Hello fellow forum members, 

What is an alternative to Prednisone? 

I have been on it since May 2004 when I reached the stage of liver failure before being diagnosed with autoimmune hepatitis.   (Starting at 50mg per day reducing as the liver function tests improved).  I was taking Imuran to help lower the Prednisone dose (by suppressing my immune system so it no longer rejected my liver).  After two major flare ups, (the first when my Prednisone dose reached 7.5 mg per day, return to large doses and the second time at 12.5 mg per day) I was changed from Imuran to CellCept.  My Prednisone doses are being reduced much more slowly this time (I have been on 15 mg per day for the last four months and hope to reduce to 12.5 tomorrow when I see the specialist) but according to the specialist team at the hospital I attend (and it's regarded as the best in Australia), autoimmune hepatitis is one autoimmune disease where you will always be on one or other of these meds or both. I am feeling a little apprehensive at reaching 12.5 mg, as it was at this dose when I flared up again last time.  My sister has recently died from a different autoimmune disease (WG) so this adds to my concerns. 

Lerie. I read a post from you a while back about carrot and celery being bad for a diseased liver. (one with chronic cirrhosis).  Where do you find this information?  How do you know which article to believe and which one is false?  Why does a healthy liver tolerate carrot and celery while one is a poor state find these foods hard to tolerate?  And how do you research the medications?  Again you a relying on which articles and publications are trustworthy. 

I'm also interested to know which of the forum members are suffering from autoimmune hepatitis, how bad your cihhrosis is and what your prognosis is.  My heptologist is hoping my liver damage will not get any worse but is not expecting the damage to be repaired.

Looking forward to some info about best research. 

Marg

 

Thanks lerie, 

I will take your advice and limit the carrot and celery juice.  My AST was elevated in the last blood tests so no reduction in my Prednisone.  15mg per day for another four weeks.  The INR count was good for my liver.  The relieving local doctor made an error and worried me for nothing.  Heptologist sees no need for a CT scan at this stage.  So, just continuing the same for a while, hoping things improve next month.

Take care of yourself.  I saw some very sick people at the Liver Clinic today and I know there a so many on the Forum who are in much poorer health than I am.  I feel fortunate that I am able to function in a normal way with the medication.

Marg

Hi marg , I'm astonoshed at how many there are at the liver clinic here too> You need to cut back a lot on the carrots especially to much Vitamin A for a sick liver. I'm glad your INR count was good. the blood is clotting properly at least.I hope things improve for you soon too sweetie.Just remember you & your condition is just as important as anyone else. Don't forget that! Just the fact we are still breathing makes us luckier than some is what I tell myself. My thoughts & prayers are with you & it's always good to hear from you! Take care. HUGS> later....

PS I hope you figured out the time thing & can join us in the chat room!

Hi Nicole,

Welcome to the forum.

I can't answer your question regarding whether you are considered cured when liver function tests return to normal as your cause is different than what we've been dealing with in my husband.

My understanding is that the liver function tests will be normal when all inflammation has gone down. If there is cirrhosis involved, one can only slow or halt the progression not cure the problem. Maybe others on the forum are more familiar with autoimmune causes.

Please keep us posted on how you're doing and feel free to respond to our posts.

Hugs and prayers for continued wellbeing,

Barb

I am stil amazed at the number of Forum members with several autoimmune diseases. Once again I feel very fortunate. Only a little psoriasis with my AIH. How lucky am I?
Marg