Diet for tansplant patient/autoimmune hepatitis

[MoeIsMe]

I am 12 years post liver transplant required for autoimmune hepatitis damage. Now stage 4 cirrohsis. In need to slow down the disease or I iwll need a second transplant. I am 48 with 4 kids.What should I be eating good liver health? What can I do to make things easier on my liver? Exercises? Recipes? Any comments, advice would be appreciated.

[layla]

I am really sad to hear your are now having to add this to your hep related problems. Is AIH autoimmune hepatitis? May I ask how you found out you have AIH? Were you symptomatic or was it a routine HCV test? LL

[mikesimon]

Have you posted regarding your AIH previously? If so, I missed it. I want you to know how sorry I am that you have this to deal with. How did your biopsy look? I know what it's like when things start to come in bundles and how hard it is to stay positive but I have no doubt you'll handle things with grace and determination. Good luck. Mike

[couchpotato]

I'm so sorry to hear of your latest troubles, how much does one person have to take?? But what do you mean by the interferon triggering the AIH? Are we all at risk of this happening or is it because you were on it for 80 someodd weeks??? This is quite alarming. Have you had another biopsy, is that how it was diagnosed?

Mattie

[honey1616]

Moe,,,I'm sorry to hear that you are now a stage 4.  I'm not sure about exercises but know that alot are watching what they eat.  Is there a tx for AIH?  I know,,,no red meats. Someone will tell more on what not to eat and has your dr advised you on this also?  Good Luck..

[mikesimon]

There is a genetic predisposition to autoimmune hepatitis and there is no link between heaptitis c and autoimmune hepatitis. The problem is that interferon boosts the immune system which is already over active in a patient with autoimmune hepatitis. That makes treatment for one afflicted with both HCV and AIH troublesome. The standard treatment for AIH is steroids which suppress the immune system. A suppressed immune system allows increased viral replication of the HCV. Interferon interferes with viral replication of HCV but exacerbates the AIH. I faced this dilemma shortly after transplantation when I was taking prednisone to minimize the risk of rejection and interferon to combat my HCV. It's a tricky balancing act at the very least.

Moe: All I have read is that one should eat a "well balanced diet" whatever that means. I think most people would say that you should avoid a lot of red meat and try to eat foods that are easily digested. If you've no alergy to soy I would try to get that in my diet on a daily basis. Everything I read indicates that soy is about as perfect a food as there is. I know this isn't much direction but the information is sparce on this issue.
Mike

[mikesimon]

It really depends on the dose. I wouldn't think you'd be taking more than  60 mg. at the very most to start with and I doubt the dose would be that high. The side effects are increased appetite and possibly some aggitation. Also after lengthy treatment at fairly high doses the face can swell up - they called it "moon face" at the transplnt clinic and it was a common sight back when steroids were routinely prescribed after transplantation. One positive side is that all your aches and pains will dissapear. A lot of people I know complained when about aces and pain once the prednisone was doscontinued. Mike

[layla]

Interesting. For the last few days I was just thinking about posting about my facial rash. I finished tx last July (after 18 months full dose) and I still have the facial rash and it is not much better. I have been prone to autoimmune problems. Before tx I had a positive RH along with severe joint pain (which is now gone), I also lost my thyroid. I think for my 1 year post tx I will make an appointment with Dr. S. Other than this I feel quite good plently of energy and mostly in good spirits. Occasional headaches and tiredness but I think that has to do with my thyroid meds.

Is anyone else out there post tx experienceing rashes?
LL

[MoeIsMe]

Thank you for the kind words and quick responses. I am new to this forum.I only"doscovered" it yesterday while hunting for information. To give you a brief background: In 1986 6 weeks after the birth of my 1st daughter, I was taking the baby for her check up and the DR said I looked yellow....I felt fine, maybe a little tired, but, heck I just had a baby and was healthy my whole life. Blodd tests etc....it was determined I have Autoimmune Hepatitis thought to have been brought on by the "stree of pregnancy". It was controlled by Prednisone and Immuran for 7 years. Than my husband and mother died within 2 months of eavh other. I was emtionally deviustated and my liver disease kicked up and the meds no longer owrked. I was told I must have a liver transplant or not live to the next summer. My daughter now 7. I was lucky enough to receive a liver on 10/13/1993. Back to work in 1995. Remarried 2 years ago with 3 new step kids...life great. In October 2004,I became ill again with what my HMO said was a cold. I continued to decline, fever, kidney infection,ascites...80 lbs gained in 2 weeks. HMO still said I had GAS!! can you believe it. In december, my PPO insurance kicked in and I was able to go to UCLA. Aldactone and Lasix took care of the ascites/weitght and I am feeling better again. I am back down to 155 lbs. A transjugular biopsy showed class 4/4 cirrohsis. Drs are confused becasue my labs are perfect and I feel great. Since October, when I was not getting better and the HMO doctors seemed to be clueless, I figured I would try to heal myslef. I started inline skarting at all the local skateparks 3-5 times per week and watched what I eat. I am convinved the exercise got everything circulating again and played a major part in my feeling good today. I had no idea my liver had failed. The doctors said its rare to get better after something like that. Usually health declines until death of transplant. I almost wish I didnt know about the cirrohsis becasue now I am freaked out and not sure what to do. If my liver does not get any worse I will be fine, butr I cannot afford any more damage. That is why I was asking for advice.

Sorry to babble on...luckily, that was th sort version. Thanks for listening and caring. I wielcom any and all comments/advice. : )

[scruffy]

You two have both earned a break. I'll talk to my maker on your behalf. frank

[MoeIsMe]

I now only take 100mg sandimmune cyclosporine 2x a day and the Aldactone/Lasix for the ascites. I stopped taking prednisone and Immuran when I had the transplant. I womder if I need to take this again to hold off the AIH now that it has kicked up.

[honey1616]

It does seem like AIH is now a whole new thing and yes,,,the perfect balance is what you are striving for.  I knew nothing about this at all and knew there were others that had it but last night I stayed up late reading more and more.  The mylar rash on the face,,,,My husband had that exact same thing end of treatment and the first say about 6 weeks,,,very definite markings.  Now,,,its not there so we assumed,,,just a rash from the tx.  
I knew when we finished up our tx,,,our dr had said something about testing us for autoimmune but at time,,,I wasn't paying alot of attention.  I looked up our last tests after finishing up the tx,,,,,,Only thing I can find is   ANA tests,,,,says negative on both.  What is that?  Does anyone know?  
So from what Rev is saying,,,,certain tests would be needed or it would show up in your biopsy.  I did read that it could make your very tired and achy?  Moe,,Rev,,,,are either of you noticing any certain symptoms?

[cuteus]

check this hepatologist's book site, the section about nutrition and liver disease, if you have not done so already. Most libraries carry the book:
http://www.liverdisease.com