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Posted 11/5/2010 1:31 AM (GMT 0)
Hello everyone,

Three months ago, my mom started feeling nauseous, and lost her appetite, so immediately we went to the doctor, and ran some blood tests. The next morning, we received a call from her doctor saying that her ALT and AST (liver enzymes) were in the 4000 range. He immediately stopped her Lipitor, the only medication she was on for 4 years. Just to give you an idea about my mom: She's a healthy 60 yrs old, never drank in her life, walks everyday, eats healthy and she has a normal weight. Eight months ago, her enzymes were X3 higher than normal, and her doctor stopped the Lipitor then too, however after few months and the enzymes coming down to normal range, he put her back on Lipitor and couple of weeks later mom suffered from Acute liver hepatitis.

Ever since that day, she's been in and out of the hospital for testings and transplant evaluations. She was prescribed Prednisone 40mg a day, despite the fact that she tested negative to Autoimmune Hepatitis, and negative to all the viral Hepatitis. The liver biopsy was inconclusive, and the CT scan didn't show any tumor. Her Bilirubin went up to 30 and she had jaundice, however within two and a half months, and with tapering the prednisone down to 2.5mg, her ALT and AST levels went down to 156 and 173 and Bilirubin down to 3.9.

We were all excited that her liver is healing, and she might not be needing a liver transplant after all, but that excitement didn't last that long. 2 weeks ago (2.5 months after the onset), her ALT and AST went up again to 1200 and 1500. The doctors were so puzzled, and kept telling us that she is a mystery woman. They cannot pin point the stressor. They really don't know, and this is a major city liver transplant hospital hepatologists. Forgot to mention that 3 weeks ago, mom had fever and severe joint pain and she was admitted at the hospital and was administered antibiotics through the IV for 4 days and released, and I wondered if the antibiotics played a role in increasing the enzymes again. The doctors thought that she had a bad flu (my sister had it too) at that point. They increased her Prednisone back to 40mg and she had another liver biopsy done this week, and we'll be getting the results on tuesday.

I wanted to share my mom's story as a Drug Induced Hepatitis case, hoping that someone will shed some light and help us understand what is going on. I thank you so much for reading my post and have a pleasant day.

 

Post Edited (Liverette) : 11/6/2010 6:51:52 AM (GMT-6)

Posted 11/5/2010 3:14 AM (GMT 0)

Liverette, welcome to the forum.  I am very sorry that your mom is experiencing what appears to be drug-induced hepatitis.  I am very surprised that the doctor put her back on Lipitor after her first experience.  Had it been me as the patient, I would've turned it down flat.  Unfortunately, in these days of managed care, patients have to advocate for themselves more than ever. 

At this time, I don't believe we have any members or caregivers dealing with drug-induced hepatitis.  There is a known risk factor for antihyperlipidemic agents such as Lipitor, and those taking it should be monitored closely with regular blood work to include liver enzyme levels.

I hope that the doctors can figure out what is causing her problem at this time, and that they can wean her off Prednisone, which has its own set of bad side effects. 

Please let us know the results of her latest biopsy.

Hugs,

Connie


Posted 11/5/2010 5:34 AM (GMT 0)
Liverette,

I'm sorry to hear your mom has drug-induced hepatitis.  Good thing about that is it usually does resolve when the offending drug is removed.  However, drug-induced hepatitis can lead to autoimmune hepatitis (AIH) in that it becomes the trigger for the immune system confusion that causes the body to attack itself.  I have AIH of unknown cause (most people never figure out what their trigger is, just a predisposition to autoimmune disease).  I wonder why they say she "tested negative" for autoimmune hepatitis?  There isn't one specific test for AIH.  Some patients do not show autoantibodies on initial presentation which is likely what they tested for....ASMA, ANA, LKM-1.  There is a scoring scale used to diagnose.  Response to prednisone is one indication but the biopsy is usually the conclusive one.  With her inital issue being drug-induced, it's likely why the 1st biopsy was inconclusive.  What concerns me is that they had her on the pred and she was improving but they weaned her off so quickly (2.5 months is quick...however they weren't treating her as an AIH patient).  So the wean itself may have caused the subsequent increase although the antibiotics could have just as well.  One would think they'd have been more careful in choosing the antibiotic knowing she had been dealing with acute hepatitis before. 

Hopefully this biopsy gives you some answers.  If it is AIH then please don't let them jump straight to transplant mode.  Most AIH'ers will never need a transplant as long as they respond to meds.  The initial meds are pred and an immunosuppressant....so we're treated somewhat like transplant patients in order to calm our over reactive immune systems.  Hopefully, your mom only has drug-induced and it will resolve and she'll only have to be careful with future meds she takes.

Please keep us posted...

Posted 11/5/2010 5:41 AM (GMT 0)
really agree with Connie... google the meds... research them anytime ur on them and of course ask here... that means everyone.... my thought will be with ur mom.. Sandi
Posted 11/6/2010 1:12 PM (GMT 0)
Thank you Connie, Dany and Sandy for replying to my post. I shared the information with my mom and sister and they were so happy that we found a site that we can actually write to other Hepatitis patients and find some comfort in knowing that we're not alone.
We're so eager to know the outcome of mom's second liver biopsy. Hopefully it will result with a diagnosis this time. The doctors were so confident that she had a Drug Induced Hepatitis, because of the facts and the fact that she didn't respond that quickly to Prednisone 3 months ago, and the first biopsy couldn't read the AIH, also the ANA blood work and some other tests determining AIH weren't positive. However the pattern of her liver enzymes skyrocketing after coming down is an AIH pattern (that's what the hepatologist said).

I also wanted to add that when her numbers were coming down beautifully few weeks ago, her Alkaline Phosphatase was going up to 473, and they were concerned that something was wrong with the bile duct or gallstone, despite that mom had CT scan and ultrasound done to check for that. Is it normal to have high ALK when you have AIH?

Mom is asymptomatic, no swelling, no itching, no confusion, no fatigue. And that's what puzzles them also. She does have high cholesterol (265), and high Tryglicirides (220), and I worry that by not taking medicine, her cardiovascular risk is gonna increase.  But I know, there is nothing we can do now. Also, because of Prednisone, she has diabetes now, and she's on insulin.

I read so many older posts, and came across a member Jerry 1, who actually had a similar case to mom. I wish I can write to him, and if there is anyone here who can contact him to contact me, I would be forever grateful.

Thank you again.

Post Edited (Liverette) : 11/6/2010 7:33:50 AM (GMT-6)

Posted 11/6/2010 5:10 PM (GMT 0)

Liverette, there is also the possibility of fatty liver disease or NASH.  The biopsy would be able to affirm that or rule it out.  So please do let us know the results of the biopsy.  This can be a learning experience for all of us.

Hugs,

Connie

Posted 11/7/2010 3:38 AM (GMT 0)
Fatty liver could be option with her chol and trigs being high. 

Which antibiotic was she on?  Alk phos can be elevated for many different reasons.  My alk phos was never elevated but every liver patient is different.

There's also a HIDA scan they can do on her gallbladder if that's still in question.  It uses radioactive dye and the scan shows the flow of the dye through the gallbladder.  Then they can look for any obstructions or issues with ducts.

Please let us know what her biopsy shows!

Posted 11/7/2010 7:56 PM (GMT 0)
Liverette,

My husband read your other post in the Prostate Cancer forum and told me that you were looking to get in touch with me.  I wrote on this forum under Jerry1 handle but my husband now uses it on the Prostate Cancer forum since it would not let him change because we only had the one email.   I will check more often now that I know you wanted some information.  I was diagnosed with Autoimmune hepatitis in Aug of 2006 after my heart Doctor increased my dose of Lipitor in May.  As the result of what my Hepatologist called a drug injury I was put on 40 mg of Prednisone and every time I tried to taper or took any kind of drug, vitamins, cold medicine, etc. my live enzymes would take off again.  Now 4 years later I am slowly being tapered off the Prednisone because of the drug 6MP which I take 50mg it is allowing me to slowly taper.  I now take 2mg of Prednisone and 50 of the 6MP. I had two liver biopsies the first showed evidence of active hepatitis with only mild increase in collagen depositions suggestive of either autoimmune hepatitis or a drug induced hepatitis from Lipitor.  The second biopsy in 2007 showed no inflamation so again tried to get off the Pred. but as soon as I got down to 10 it would flar up again.  The 6MP seems to be working the best and hopefully I will be off the Pred. by Christmas.  The highest my liver enzymes were around 900 even after all medications were stopped.  I also was asymptomatic and was lucky it was found on a routine blood test done because I was on Lipitor.  I hope this helps.

MJ 

Posted 11/8/2010 1:39 PM (GMT 0)
Thank you MJ for getting back to me. Hope all is well with you and Jerry. Mom's liver enzymes go much higher than yours, and it's been three and a half months with conflicting diagnosis. Hopefully, we'll get some answers tomorrow and also hopefully her liver enzymes will be much lower tomorrow on her weekly blood test. Did you have a high Bilirubin when you first had the flare up? Mom had a Bilirubin as high as 30 and severe jaundice, also her Albumin level has been low ranging from 2.6 to 3.1. Dany and Connie seem to know a lot about the Autoimmune Hepatitis, and they've raised some other possible scenarios. Mom's situation must be derived from Drug Induced, for the fact that 9 months ago when she was on Lipitor, her ALT and AST went up tp 153 and 176. And the doctor stopped the Lipitor then, only to put her back on it 5 months later once her enzymes went to normal. I wish we knew how damaging that was then! However, the Drug Induced Hepatitis can also trigger the Autoimmune Hepatitis and that's what I want to make sure that the biopsy could reveal. She usaually doesn't respond well on Prednisone, but we'll see the numbers tomorrow. Her blood glucose is so high from Prednisone, that she's on Insulin 3 times a day. Is that a common side effect that you've seen here on the forums?

Again, thank you MJ for answering to my post, and thank you Connie and Dany for following up with me. We've been feeling so overwhelmed and lonely in this, because the doctors have been telling us that mom is a mystery case, which makes us more nervous. Should I be posting a new topic tomorrow, or just continue on this topic?

Have a great day!
Liverette
Posted 11/8/2010 3:11 PM (GMT 0)
Liverette,

My highest bili was 23.3 by the time they popped me in hospital.  My AST/ALT never went into to 1000's but I have known others who have gone into the 5000's and from what  they described, weren't as ill.  So I think everyone really is different.  I checked old labs and my albumin only went as low as 3.2.  However, once at 3.2 it was from a lab whose range was 3.4-5 and another the lab's range was 3.7-5.1...so it also depends on the lab that's running the bloods and what their normal ranges are.

Steroid-induced diabetes isn't a usual side effect of pred but it does happen.  Same way most people gain weight on pred but I have heard from a few who have actually lost weight.  Again, everyone is diffferent which makes figuring things out sometimes that much harder.

You should speak with her docs about trying Entocort.  It isn't traditionally used with AIH but is with Crohn's.  I know of some who have been on it since the pred was too bad for them.  It is also a corticosteroid like pred.  Maybe they'd be willing to try that and see if her diabetes gets better?  It may not but may be worth bringing up to her docs.

Posted 11/8/2010 7:26 PM (GMT 0)

Liverette, Dany is our resident expert on AIH.  She has given you some very good information.

In answer to your question, it's best to just continue posting on this thread.  Once you get past 3 pages, you can start a Part 2 thread.  It's easier to keep track of things when it's all in one thread.

Hugs,

Connie

Posted 11/9/2010 9:07 PM (GMT 0)
Hi Connie, Dany,

We just came back from the doctor's office and our worst fear came true. The liver biopsy indicated as follows:
-Chronic hepatitis, undetermined etiology.
-Cirrhosis (Trichrome, Reticulin stains).
-There is no hemosidirin (Iron stain).
-No globules of alpha-1-antitryspinare seen.
-There is no evidence of dysplasia or malignancy.
And the comment at the end of the report said: Some of the findings are suggestive of autoimmune hepatitis. Drug induced liver injury is not favored, although it cannot be ruled out.

The doctor said that mom's condition is end stage liver hepatitis, and he doesn't know how she got here in 3 months, because her blood tests throughout the years (4 times a year) never indicated a problem. He's still not 100% sure of Autoimmune, but he said most likely a combination of drug induced and autoimmune.
Mom's ALT and AST have come down a bit especially the AST more than the ALT (951, 1169) from (1580, 1233). It's weird that the AST is coming down more. Anyhow her Alkaline was even higher today 519.
They talked to us about living donor transplant, and they'll be listing my mom as of this week since she's been fully evaluated already. They also told us that her MELD score is low, to even talk about transplant right now, since mom is asymptomatic and has no physical problems.

We are so upset and sad that this happened to our mom. She was such a healthy (mind and body) woman and she took care of everybody around her. How could this happen so suddenly and get so bad?
Thank you ladies for reading my story and being there for me. I just hope there is a hope for mom to be around us for a while.

Love,

Liverette
Posted 11/9/2010 9:47 PM (GMT 0)
Liverette, the good news is that she is asymptomatic (aside from the liver enzyme elevations) and far from needing a transplant.  My guess is that she had undiagnosed AIH and it was triggered by the Lipitor.

Is the doctor treating it as AIH?

Hugs,

Connie

Posted 11/10/2010 1:38 AM (GMT 0)
The doctor is somewhat trating it as AIH with 40mg of Prednisone, but didn't wanna give her Imuran, or other drugs, saying that her liver is already damaged and the rest of the drugs won't help her at this point.
I wonder how long could a person with end stage liver cirrhosis live? Perhaps Dany has an idea of that (in general). We would like her to get a living donor transplant, if we can find a good match (both my sister and I have different blood type than mom), but te doctor said that at this stage, it's early to do that, since mom is feeling ok. My concern always is that mom could suddenly deteriorate just like what happened to her 3 months ago, and then it would be so hard to do it when other organs start failing.

I wish you guys can give me some advice to what direction my focus should be at this point.

Thanks again,

Liverette
Posted 11/10/2010 3:23 AM (GMT 0)
I'd give some thought to the living donor suggestion.  Does she have siblings who might be a match and willing to be a LD?  There's no rush about this at present, though.  I think the main thing now is stabilizing her and to be aware of any signs or symptoms she may display; i.e., rising liver enzymes, signs of encephalopathy, fatigue, etc.

Hugs,

Connie

Posted 11/10/2010 4:24 AM (GMT 0)
Liverette,

I'm so sorry to hear that it's so advanced.  I agree with Connie.  It's great that she is asymptomatic.  That will help her tolerate her treatments better.  Receiving a transplant would be great as it will get her back to a good starting point with a new healthy liver.  The subsequent post-transplant meds should help keep the AIH under control as they are the same as AIH'ers receive.  That's something to just get ready for but maybe there is still enough viable liver that she may not need it?  Whatever is still working may regenerate in time and avoid the whole process.  Have you asked the docs about the possibility that she may only need medication?  I know they talked live donor but do they think it will be a definite?  I am forever the optimist.  I know a lady whose daughter was diagnosed at age 10 and was told she'd need a transplant ASAP.  Mom wanted her medicated to see if the drugs would work to keep her own liver as long as possible, as mom put it, she only had a few viable cells on biopsy...she's 16 now and still has her own liver and is a fabulous teenager.  Apparently, her liver has these lumps on it that they think is regeneration from whatever was still there.  So amazing things can happen.

For now, it sounds like the docs are taking a proactive approach to her care and are on top of it.  Everyone is different and your mom's ability to just work through things is likely why she's never had any illness to point in the direction that something was brewing. 

If the pred is going to work then that's all she needs for now.  The immunosuppressants are considered steroid-sparing drugs so they'll add those if they see that she'll be able to come off some of the pred.

My fingers are crossed that the pred does work and get her enzymes down.

Posted 11/10/2010 4:03 PM (GMT 0)
Dany and Connie,

I am so grateful to your input. I am also optimistic that her liver enzymes will come down eventually, and perhaps her liver could find some healthy cells to regenerate slowly. My sister and I will be taking her to see another transplant hepatologist at a different hospital for a second opinion consultation.

I am more concerned about her cholesterol and tryglicerides not being treated. It seems that the hepatologists don't care much about that, but I think having controlled cholesterol is a viable and important aspect to her cardiovascular health, in case she is gonna have a transplant surgery. Do you ladies know if there are safer cholesterol lowering drugs out there than the statin family (lipitor) which is so toxic to injured liver?

I also asked the doctor for a flu and pneumonia shot concern, and she said mom should get them but at 2 weeks intervals. What do you think?
At this moment, we don't have a family member or a sibling with the same blood type for a potential living donor. We have a distant cousin from my dad's side with blood type O that she keeps insisting of donating part of her liver, but my mom is against that idea, because that cousin just had her second child, and mom is so afraid that should anything happen to her,those kids will be without a mom. It's a difficult call!
Again, thank you so much for your support. I pray that God bless you with good health and happiness, and please know that you are so appreciated.

Hugs,

Liverette
Posted 11/10/2010 5:26 PM (GMT 0)

Liverette,

When I was first diagnosed I was told NO vaccines for at least a year to make sure I was stable.  There are others whose docs told them to get a bunch.  I think it's great that she will be seeing another hepatologist for a 2nd opinion.  Check with that one as well re vaccines and every question you have asked thus far.  Make sure you keep a notebook with questions and space for answers so you don't forget to ask or what was answered.  All the docs are different and all the patients are different.  It is a rare disease so it doesn't have a definite standard.  Go with what you can all agree on and feel comfortable with.

As per living donors, here's a quick story...I volunteered at the ALF's (American Liver Foundation) culinary gala this year.  One of the speakers was a 12 year old girl who has Primary Biliary Cirrhosis.  She was diagnosed shortly after birth.  When she was less than 2 she had her first transplant.  Sadly, it quickly failed and they called her parents to say that unless they can try a live liver donation very soon, she would die.  Her dad was a match and I got to see both of them on stage talking about how wonderful life has been since.

Maybe ask about Welchol (Colesevelam).  I've read of someone with AIH being treated with that one.  I am so hoping that the meds are all she will need.  Please let us know how the 2nd opinion goes!

Hugs back!  You are a wonderful daughter and mom is very lucky!

Posted 11/10/2010 5:29 PM (GMT 0)
Liverette, I think at the moment they are more concerned with getting her liver enzymes down than with her cholesterol and triglycerides.  However, since you are seeking a 2nd opinion, ask the new doctor about this, and any other questions you may have.  Be sure to write them down and take them with you.

Hugs,

Connie

Posted 11/10/2010 11:22 PM (GMT 0)
Liverette,

Feel free to shoot me an email anytime. There should be a link under my name to the left.

Dany
Posted 11/12/2010 2:59 PM (GMT 0)
 

I am so sorry to hear that your Mom's liver biopsy was not more positive.  I agree with the other members the important thing now is to get her liver enzymes down before trying to introduce another mediciation for Cholesteral.  I have a heart stent but have been off all cholesteral medication since I was told I have AIH.  My heart doctor feels at this point that I need to get the liver enzymes under control before starting back on any kind of cholesteral medicine.  I was on Welchol for a while it lower my cholesteral some but not enough to chance the risk of my liver enzymes increasing.  Since your Mom is not displaying any symptoms that is a good sign. 

Jerry1  

Posted 11/12/2010 3:38 PM (GMT 0)
Good Morning Everyone,

Thank you, MJ, Dany, Connie and Emma for your responses. We are so happy to see that mom is so eager to get well, and she wants to fight hard to overcome or control this disease. Both my sister and I are trying to get her to see 2 different specialists, one here in LA, and the other in UC San Francisco. Also, next week, we'll be seeing another hepatologist at the same clinic where my mom's doctor is. Perhaps it is not ethical to switch doctors especially from the same clinic, but we were told that this other doctor has more experience and expertise. I guess when it comes to a serious situation of your loved one being in danger, you take all kinds of actions....The other 2 doctors' visits won't be very soon, we'll be waiting until mom's records get to them, and they'll be reviewing them and then schedule an appointment.

Well, thank you again for taking the time to read my post. We love you all so much (Mom and sis read the posts with me). And I'll be posting next tuesday. Have a pleasant weekend!!
Posted 11/12/2010 6:17 PM (GMT 0)

Liverette, there is nothing wrong with seeking 2nd and even 3rd opinions, or in changing doctors.  The point is to get the best care for the patient.  When I was diagnosed with liver cancer, I bounced from a GI doc to an oncologist to Interventional Radiology to Surgery to the hepatologist I have today.

Continue to advocate for your mom in whatever ways you can.

Hugs,

Connie

Posted 11/18/2010 12:21 AM (GMT 0)
Hello Everyone,

Mom's yesterday blood test result was better than last week's. Her AST and ALT went down again from 951 and 1169 to 707 and 953. We're happy that her liver enzymes are going down as oppose to going up or remaining the same. Although it's a slow decrease.We're grateful!! She's still on Prednisone 40mg, and next week we will see her doctor again, and the following week, we'll be seeing another hepathologist in the same clinic, and we're still waiting to hear from UCLA and UCSF for our second and third opinion schedule.

So far, it's good. Mom is feeling fine, and full of energy. She doesn't believe that she's gonna need a transplant, but I know that having a Cirrhosis is not a joke!

I will keep you posted next week. Hope you all are doing well, and I wish you all a good week.

Hugs,

Liverette

Posted 11/18/2010 1:13 AM (GMT 0)
Thanks for the update, Liverette!  So glad to hear that your mom's liver enzymes continue to decrease and that she's feeling well.

Hugs,

Connie

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