autoimmune hepatitis

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emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 1/2/2006 6:55 PM (GMT -7)   
Hi,
 
I have various auto-immune diseases and usually post on the lupus board. I am recovering from what was thought to be rx drug induced hepatitis (an anti-seizure medication). The enzyme counts have been slowly dropping from what my dr. referred to as critical range to staying above normal but not critical.
 
I have not taken the offending medication since 10/24. I did/do not take tylenol because of the possibility of liver problems. I do not drink. The docs substituted a med that is metabolized by the kidneys (very rare I understand) and took me off of one other med that they felt was better held until all was normal. This has led to a flare of my other autoimmune stuff. Not fun.
 
My questions are:
Generally speaking, how long can it take for enzymes to get back to normal?
My dr. ran a test for anti-smooth antibodies that i understand are indicative of auto immune hepatitis. The number was right on the top of the high end of normal. Would this be significant. (Can't reach the doc--out of town.)
 
Thank you very much in advance for any input you may have.
 
emmie

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/4/2006 5:53 PM (GMT -7)   
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.
lerie


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 1/5/2006 9:08 PM (GMT -7)   
Lerie,

A reply always helps! Thank you. I have read your amazing story. God Bless you.

My enzymes are still out of normal range, but not horrible. I'm having them checked again next week. hopefully, they'll be okay and I can resume the meds needed for my other stuff.

Take Care of yourself!

xoxo emmie

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 1/5/2006 10:09 PM (GMT -7)   
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....
lerie


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 1/9/2006 9:42 PM (GMT -7)   
Hi lerie adn emmi,
I have autoimmune hepatitis (was diagnosed about 18 months ago but docs say I may have had it for as long as 20 years) which has resulted in chronic cirrhosis.  I take two medications (Prednisone and CellCept) to control the liver function and after a few hipcups  things seem to be under control.  I take Fosimax to minimise the damage to my bones caused by Prednisone. 
Are you suggesting I don't take meds?  I think I would be dead without them!!
It's a dilemma.  The medication is tough on the liver but without a functioning liver we cannot survive!!

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 1/9/2006 9:45 PM (GMT -7)   

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


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/10/2006 5:14 PM (GMT -7)   
Hi Marg, What I,m suggesting is do research on drugs & liver, talk to specialists& use caution or you may be dead with them. Please always get informed. I didn't & it's slowly , Painfully killing me!Take care & god Bless.later....
lerie


lindak
New Member


Date Joined Dec 2005
Total Posts : 3
   Posted 1/19/2006 11:47 AM (GMT -7)   
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

lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 1/19/2006 6:38 PM (GMT -7)   
Hi lindak, Extremely well put. If I'd only been smart enough to research instead of of just trusting what they said & what they gave me how different my life would be today.Toxins are the key here to prevent further damage whenever posible. Thankyou & God Bless you. later....
lerie


emmi
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Date Joined Apr 2005
Total Posts : 1529
   Posted 1/25/2006 10:16 PM (GMT -7)   
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

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's, seizure disorder, Raynauds, anemia


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/26/2006 7:01 PM (GMT -7)   
Hi Emmiie glad to hear things are going better with you. way to go girl .I wish you all the best. Take care & God Bless.later....
lerie


lindak
New Member


Date Joined Dec 2005
Total Posts : 3
   Posted 1/27/2006 3:52 PM (GMT -7)   
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)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/27/2006 10:52 PM (GMT -7)   
Lindak, I am so impressed by your post urging research, choosing docs, knowing what certain meds do, and becoming an active participant in one's disease process and plan.

I was basically healthy up until '93 when I was diagnosed with hep C. Being a medical transcriptionist by trade, I was already fairly adept at research...but I didn't get online until '99 and that opened a whole world of info and support groups, etc. Everything that has hit me since then, I have learned as much as I can about it. I believe knowledge is power. Often, though, there are things that can only be discussed with someone who has been through the same thing...not to mention the support shown in forums such as this.

I am an advocate AGAINST Prednisone. I know that for some people, it is a lifesaver. But for those who have alternatives, they are better off trying something else. In 2003, I learned that I had avascular necrosis/osteonecrosis (AVN/ON.) My research taught me that Prednisone is the #1 cause of this disease. My best friend's husband has recently been diagnosed with it, as he was on Prednisone for close to 2 years following medical problems caused by a tainted bottle of a mineral supplement more than a decade ago. My AVN was not caused by Prednisone, but I had taken 2 capsules of it years ago and had a full-blown psychotic reaction to it. I have had unusual side effects from other steroids, as well, so I just steer clear of them altogether. I think the fact that some doctors are aware of the bone damage that Prednisone causes, and are prescribing Fosamax for protection, is wonderful. I just hope that Fosamax truly will protect.

Connie

lindak
New Member


Date Joined Dec 2005
Total Posts : 3
   Posted 1/30/2006 2:02 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)


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 1/30/2006 4:24 PM (GMT -7)   
Hi Linda, Please always check out side effects of all meds & their risks before taking them.I didn't & I'm paying for it now. You did a smart move to change G. I.'s if you don't feel comfortable with this one. While there are a lot of "bad" Dr.s out there , there are a lot of good ones. You need to be picky,your life is in thier hands.Try snacking on veggies & low fat popcorn to relieve your cravings. Hopefully someone else will come soon to give you more ideas. Good luck & take care. later....
lerie


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 2/13/2006 10:25 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
 

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/13/2006 11:43 PM (GMT -7)   
Hi Marg, My dietician at the liver clinic & my hepatologist & family Dr. always take a great deal of time talking to me about everything. carrots are very hard to digest & cause Vitamin A toxicity to the cirrhotic liver & Are full of sodium as is celery. You need to keep a close eye on all foods high in Vitamin A because of toxicity to the liver. Type in Vitamin A & cirrhosis You should find something or liver disease & Vitamin A Toxicity. To research drugs just key in presciptin drugs & side effects. Surf the net & keep your self well informed. You can also do some reseach on HW rescources click on hepatites. Basically most of your high Vitamin A foods can be tolerated in small Quality's except carrots because of the beta caratene. I can let you know most of the foods high in Vitamin A. our liver can't break down protiens, cholesteral, triglicerides, Vitamin A & vitamin B 3 anymore & of course the high sodium foods cause edema & ascetis. I don't know what would replace the prednisone but I do know it causes liver dammage as well as bone dammage. I hope some of this info helps.If you have any more questions about foods let me know. I'm at the stage where I have trouble digesting most fruit & vegatables that are raw Or fruits with peels. No the dammage will not repair due to the scar tissue. With proper diet & taking care of yourself with a healthy lifestyle progression MAY be drastically slowed or you may stabelize for a long period of time. Truth is no body knows. My thoughts & prayers are with you.later.....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 2/14/2006 9:19 PM (GMT -7)   

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


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 2/14/2006 9:44 PM (GMT -7)   
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....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 2/14/2006 9:45 PM (GMT -7)   
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!
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."
 
 
lerie


nicole j
New Member


Date Joined Mar 2006
Total Posts : 5
   Posted 3/14/2006 12:59 PM (GMT -7)   

I read your message. I was diagnosised with AIH in Mar 04. My liver enzymes have been as high as 800. After, almost two years of elevated levels, they finally returned to normal in May of 05. I have almost been in remission a year now. I am currently taken Imuran (175mg) a day and Actigall. Like you I don't take Tylneol and I don't have to many pain meds I can take. I have two different autoimmune diseases. And I know how you feel. I was in the hospital for four months. I inital went in for Rhabdomylsis and everything progressed after that. I was also diagnosis with Protein S Definiceny. So, I know how you feel. I have posted my email address on my profile and I don't mind anyone contacting me.

I only have one question Are you considered cured after you liver function are normal? and if so why do I continue to have all the symptom, Am I suppose to continue to feel this way?


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/14/2006 2:03 PM (GMT -7)   

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


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/14/2006 7:11 PM (GMT -7)   
This is so good to read of others with AIH. Unfortunately, each time my Prednisone dose is lowered below 15mg per day the LFT's become elevated. Hopefully, with a few more months of CellCept, I will be able to go to 12.5 and perhaps even lower. I know Prednisone is not a good medication, but if it is all that can keep you alive you have no choice. I pray for the day I can say I only need the immuno suppressant.
Marg

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/14/2006 7:13 PM (GMT -7)   
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

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/14/2006 7:22 PM (GMT -7)   
Hi Nicole, I don't think you are ever cured of AIH. My heptologist said it is one autoimmune disease where if you stop the meds the disease returns. My LFT's were also very high (like yours - around 800). The most alarming result at that time was my albumin was 16. (That was in May 2004) Most are now in the normal range althought AST was elevated last month. I have blood tests every month. If things are good for three months my Prednisone is reduced but if there is any elevation, i remain the same or increase the meds. Imuran did not do the job for me so I take CellCept, also an immuno-suppressant. Twice I've been as low as 12.5 but the blood tests then go bad and I need to increase it all again.
I'm sure research is constantly being undertaken and before too long there will be others meds for us.
Make sure you read lerie's posts about diet. She is an expert and has given me such good advice.
I take Fosimax to decrease the risk of osteoporosis. I am very fortunate to have only one disease.
Good luck. Talk to you soon.
Marg.
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