Autoimmune Hepatitis - New to Forum

Greetings!

I've read a month or so of entries, and I can see that there are many wonderful people here. So, thanks in advance for all you do.

I am Schimbare. I was dx'd with AIH at age 29. I probably had it from at least the age of 17, when I donated blood and was rejected as a donor because of abnormal liver enzymes. My pediatrician at the time dismissed the warning, saying that they were very picky about who gives blood, and I should not worry about it.

At age 22, I was diagnosed with Sjogren's syndrome. ANA was (and is) about 1:640. At age 29, I had some baseline blood tests done before trying to get pregnant, as I knew that SS could cause problems for the baby. At that time, it was found that my alt and ast were elevated.

I had a liver biopsy at the time, and the results were inconclusive. Despite poking the heck out of my liver, the MD was unable to get a piece of liver large enough to provide adequate tissue for analysis. It was suggested that perhaps my liver was cirrhotic, thus preventing the needle from sucking up a big enough piece of liver. Who knows.

Spontaneously, my liver enzymes returned to normal, and I was cleared for a highly monitored pregnancy.

Blah blah, one healthy boy later, I am thinking that the liver thing was some sort of weird fluke.

My liver numbers were normal post pregnancy. We figured we had dodged the bullet until my son was six months old and I noticed in the mirror in the car in the bright sunshine that my eyes were yellow. My enzymes were in the 400 range, and within days my hepatologist started me on prednisone and imuran.

That was in 1995, and the baby was just accepted into the college of his choice. (Momma brag!)

Now, while the AIH has been quiet for all these years, the long term effects of having a very cirrhotic liver are taking their toll.

The fatigue I have suffered with for all these years is markedly worse. It varies, but on average I have about 6 hours of useful wakefulness during the day. My sleep is all screwed up. I have had ankle swelling for years, but now the fluid is up to my knees. It is very distressing.

There is more, but I want to get to my main query, which is this - my ammonia level is at 50. I definitely have brain fog that comes and goes. But, I am also pre-menopausal, completely stressed out being divorced from a verbally abusive man, dealing with my boys and their interaction with their dad, dealing with the 17 year old's surly and sometimes very rude behavior, as well as knowing that my ability to financially stay afloat will be ending very soon. I tend to run anxious/depressed, and I take Paxil for that, but it does not seem to be doing the trick anymore. Oh, and I have the symptoms of PMS for about ten days each month. Oh, I am a real joy then. I have a long term serious relationship with a great man, but with my health and everything else, I don't feel very loving towards him. He understands, but he gets frustrated, causing me more stress, etc. Oh, and I have gained thirty pounds over the last six months so I feel very fat and my clothes don't fit and I have no money to buy new ones. And my mother broke her hip a month ago, but she is in Florida, so there was nothing I could do, which was upsetting. She is doing fine now.

So, how do I differentiate between brain fog caused by ammonia, and brain fog caused by age (47) and/or all the other crap in my life? My hepatologist ( big name MD in NYC)(I love him), feels that encephalopathy is present, and prescribed the evil-liquid-which-shall-not-be-named. I tried it and found it absolutely intolerable in all ways. He then prescribed Xifaxan. I am currently waiting to hear if the drug company will help out with the cost, which is simply out of the question for me at this time.

So, how do I know? I am at my wits end with the stress in my life. I can say that I am not able to handle the stress the way I could when I was younger. I feel that I am at the end of my rope. I feel that I am not making good decisions because of the stress. I don't feel like myself. I feel foggy and unsure. It is not terrible, but these feelings are there. And I have not felt this way any time in my life before now.

I see a psychologist, and she spoke to the hepatologist, because she noticed that I was not myself. He concurred with her assessment of my brain not working correctly.

I guess my issue is wondering how much I can blame on HE and how much I can blame on everything else.

I really appreciate any replies. Because stressing about how much I am stressed is really not working for me right now.

Thank you very much.

Take the lactulose.

Hi shimbare

Makes me sad that you have got so bad cirroses from a "misstreated/ignored" AIH. Makes me angry.
Think your stress is both from your HE and from tha fact that your under pressure.
Take the lactulose please- Do you get pred now?
If you do that surely makes the hole system stress as well- have never felt so bad as when on preds.

Take care! Good luck and keep us updated-

Wow! Thanks so much for the thoughtful replies! Especially David. Succinct. I like that. I could learn from you...not to go on and on and on...

Carol, thank you for telling me that in the hospital, they will get the lactulose into me no matter what it takes. This is a good piece of information to have.

Connie and This too shall Pass, thank you for your responses. I am considering getting another prescription of the lactulose. I threw the first bottle right in the trash after trying it twice. I know...not a very good try. And now that I have read all these responses, I am feeling more likely to give it a try again.

Dany, you are wise to mention my loving partner. He and I talked again, about my fear for the future, and how we are not married - and he did not join Match.com to end up as a care-giver to a very sick woman. He is extraordinary, in that he likes to talk things out, unlike many men. So we talk and talk and talk and when we do, it is always better when we are done. We don't always agree, but the relationship is always stronger after we have a good heart-to-heart.

I have spent many years hiding the truth from my friends and extended family. I hid the terrible verbal abuse that I endured while married, and I hid my worries and physical symptoms of he AIH and cirrhosis. But I cannot and will not hide the truth any longer. It is virtually impossible for me to ask for help, though I am learning. I've got the boys doing more chores to help the house run more smoothly, so that is good. I have to get my parents and close friends up to date on how I really feel and what I am experiencing due to the HE and the fatigue.

Dany, I took pred and imuran for several years, but I was able to wean off of both of them and therefore I've just been taking paxil for all these years. The Sjogren's is also getting more problematic lately. I really need a mouth doctor. I went to a rheumatologist, but he was not helpful. I have an eye doctor, but really my eyes have been ok, I just use moisture drops a lot. I tried restasis, but it burned too much and I had to stop.

My mouth is getting drier and drier. I cannot tolerate moisture liquids that have too much fake sweetener - nutrasweet and the like give me an instant headache and make me feel sick to my stomach. Plus my nose gets ridiculously dry at night, making me gag and snore. Lovely for my dear lovemuffin to endure. Fortunately, my teeth are still fine.

My hepatologist was willing to give me the Xifaxan without taking the Lactulose, despite the studies that use it as an adjunct only. Really, I am a very compliant patient, and have been for all these years. That Lactulose really threw me. Truly, I still don't know how I will get it down when and if I try it again. And loose bowels all the time? I know it sounds like I am just complaining over nothing, given the long list of horrid physical symptoms as the end-stage progresses. But, the runs all the time?? It may take me a bit longer to get used to that idea before I can try to get down that disgusting swill.

I always knew HE might be on the horizon. And I knew lactulose was also going to be a part of my long term experience with AIH. But, to be honest, I figured I'd make it to around 55 before this particular crap hit the fan. I am 47. I need a bit of a paradigm shift in the old, somewhat confused brain.

Thank you all again for your responses.
Schimbare

I took lactulose for years when I had HE. Now I take anti rejection meds for my transplant. You do what's needed to stay well. This isn't rocket science.

Neani, welcome to the forum. I can't recall any AIH members who can't take other immunosuppressants other than Prednisone, but Prednisone seems to be what most take plus other drugs.

My co-moderator, Dany, has AIH and is very knowledgeable about the disease. I will alert her to your post.

Hugs,
Connie

Neani!

Welcome.  What reason did your doctor give you that you are rejecting any other immunosuppressant?  Which have you been on?  What has your drug history been for AIH treatment.  I'm happy to hear the 20mg of pred is taking care of the latest flare!

Stress is a trigger for a flare in almost all autoimmune disorders.  It's best to redirect energy when you do have stressful times and keep reminding yourself that things could be worse.  Always try to find a positive in a negative and it will help you deal with the stress.  I know that isn't always easy but I work really hard at it and it can be done.

Oh by the way, my Dr. Looked a bit surprised and told me I was a "A Rare Bird!"

Some symptoms were tongue swelling and sensivity bleeding and body rashes.