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Old 09-02-2005, 08:50 AM   #1
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Arrow hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Hi, I'm looking for any other/additional ammonia-reducing methods besides lowering protein in the diet and taking lactulose (for those with liver disease)? My dad, who has autoimmune hep, is doing both already, but, needs additional ammonia cleansing.

I've heard that there are newer drugs compared to lactulose, but, haven't been able to find clear information. I did see one new method, studying synbiotics and altering gut chemistry, but, that still seems to be experimental.

Any help is greatly appreciated.

 
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Old 09-03-2005, 03:47 AM   #2
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

what stage AIH is he. I also have AIH with a PBC overlap. The cure for encephalopathy is tx! They try lacutolose to reduce the ammonia. He is paying attention to his diet? Would love to know more... AIH is tough. Also remember to consult a doctor before trying any liver cleansing stuff. If he is encephalophic, he must be pretty advanced. Many of the things like dandelion and grapefruit are not neccessarily good for end stage liver patients, and in fact, some can be toxic. I would pick up a couple OF American Liver Foundation endorsed books Melissa Palmer, Howard Worman, some of them have books. I would talk to doctor. Do some research. I just received all this other info from a bone doc on the amt. of exercise you need and also how to offset the bone loss associated with the Prednisone!

 
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Old 09-03-2005, 08:41 AM   #3
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Quote:
Originally Posted by OhioMOM
what stage AIH is he. I also have AIH with a PBC overlap. The cure for encephalopathy is tx! They try lacutolose to reduce the ammonia. He is paying attention to his diet? Would love to know more...
Hi, OhioMom, thanks for writing.

He's had diagnosed AIH for well over a decade and is now end stage. My mother will be his living donor, was tested in July, and the doctors wanted to do the surgery in Sept 2005. Due to some insurance technicalities he wants to wait til Feb 06. Not sure that can happen if he's getting far worse, so tx *may* be in Oct 05. We have a whole-family appointment with the transplant team mid-Sept and will see then what they say. (I will be moving back home to care for them post-surgery, and my sister lives in the area.)

He is very carefully reducing protein from his diet. I've been a vegetarian for 20 years, so have been trying to help him with all the culinary and food-alternatives advice I can. He's got it quite low (the diatician actually had him increase it a bit, he was eating so little) and the lactulose helps, but, he had a fairly bad "episode" recently and it scared him thoroughly, plus he's having them more frequently. His mood is often aggressive. I've heard of newer alternatives to lactulose that don't come with quite the nasty digestive side-effects and have been searching for them. My thought is that he *may* be able to use both the newer drug AND the lactulose. Another tx patient suggested really loading up on the lactulose for a few days and then taking a day off or a day at reduced dosages; I may suggest that to him also.

We have no interest in doing anything with homeopathic recipes -- he's too far advanced to be fooling about with anything the doctors don't approve.

The prednisone is nasty stuff. He was on it for a decade+ in varying dosages. It also masked a different problem -- RM injury to his dominant wrist/hand -- which was debilitating once they reduced his dosage of prednisone. I'm not sure he had the calcium issues that a female would, sorry, I don't know a lot about that as a result. I'd think light "weight-bearing" exercises would be best tho. Does PBC complicate this further?

Best wishes to you!

 
Old 09-03-2005, 10:27 AM   #4
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

pbc is also an autoimmune liver disease of unknown origin, like the AIH! the difference is that in most cases AIH can be controlled, but the PBC is absolutely progressive.... When I went to the bone doc this week she told me to do light exercises, rubber band stretches with the arm and light lifting with cans, walking and such. I am on a lot of prednisone, which is not really helping much either, they say that if i am not under control in the next month or so, they will list me as well. my billi is 5.7 INR is 1.0 and creatinine is .5

I think that is a meld of 14 or 15. My billi was as high as 22. the alts are over 1000 but have been much higher. i have been told that at th end those numbers are not as important as the others. I am still working! I will probably not work much soon, but for now well......

I agree about the homeopathic, i am constantly saying its fine if you arent really sick, but if you have a chronic illness stay away! what tx center are you using. its great that your mom can be a donor... i guess i will be going the cadaver route! all the best. mom

 
Old 09-03-2005, 07:34 PM   #5
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Quote:
Originally Posted by OhioMOM
pbc is also an autoimmune liver disease of unknown origin, like the AIH! the difference is that in most cases AIH can be controlled, but the PBC is absolutely progressive....
That's horrible to hear. :( I hope that you do well though -- you certainly seem to have an upbeat attitude, and I know that really and truely is a help to your overall health.

Quote:
Originally Posted by OhioMOM
When I went to the bone doc this week she told me to do light exercises, rubber band stretches with the arm and light lifting with cans, walking and such.
That makes sense to me. Light weight-bearing exercise is the best for building strong bnes in all women.

Quote:
Originally Posted by OhioMOM
I am on a lot of prednisone, which is not really helping much either, they say that if i am not under control in the next month or so, they will list me as well. my billi is 5.7 INR is 1.0 and creatinine is .5
Sorry, I don't know his numbers off the top of my head. (I'm sure that my mom does -- she still remembers the phone number she had when she was 5.) He has been on a LOT of prednisone at times. It really changed his moods also. And he got the typical "moonface."

Quote:
Originally Posted by OhioMOM
I think that is a meld of 14 or 15. My billi was as high as 22. the alts are over 1000 but have been much higher. i have been told that at th end those numbers are not as important as the others.
I think that's true. His MELD was only 7, last time I knew, maybe jumping to 12 this last time? But, that wasn't enough to list him.

Quote:
Originally Posted by OhioMOM
I am still working! I will probably not work much soon, but for now well......
Be careful! I KNOW that working too much has accelerated this in my dad's case. He spent the last few years trying to work all the time to earn as much as possible toward his pension cause he's worried about my mother. He wore himself out. Please don't do the same!

Quote:
Originally Posted by OhioMOM
I agree about the homeopathic, i am constantly saying its fine if you arent really sick, but if you have a chronic illness stay away!
I work in the sciences, so I find anything based on anecdotal evidence annoying when it comes to critical health issues. I'm not against those who want to take zinc or herbs for a cold, but, a major organ....?

Quote:
Originally Posted by OhioMOM
what tx center are you using.
Strong in Rochester, NY. My parents like them, I'm not sure I think they are all that. They confuse too many things (tests, appointments, which doctor is doing what, etc.) for my comfort level and most of the doctors have horrible bed-side manner in my opinion -- but, I will learn more next week when I spend a significant amount of time with them. I kinda feel at a loss though -- what if I think these people are hacks and then I'm putting my parents' lives into their hands? Do I not say anything since my parents like and trust them and it is ultimately their choice? Its all very delicate.

I hope you're in a good location for donor livers. A friend of mine in end-stage Hep C moved to Miami to get on the list there and was able to get a tx when he was critical... a few more days and he would have been out of luck, and he wouldn't have had that shot where he lived. Its almost certain he would have died.

Quote:
Originally Posted by OhioMOM
its great that your mom can be a donor... i guess i will be going the cadaver route!
Yes and no. If there was a way for him to get a full liver without someone else having to die, that would be my choice. As I'm sure you know, you have a much better shot when you get a full liver with AIH, since it will infect the new one also. And he'll never grow a piece to be the size of a full liver donated to him. And instead of just risking him, we risk mom too. Its got its downsides. On the other hand, the waiting list is nerve-wracking and risky also.

Best wishes!

 
Old 09-03-2005, 09:57 PM   #6
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

dr shaw stiffel was there for a long time and left for pitt... great doc! he built that program i think. i am using cleveland clinic. love them! they are very proactive and have recruited the best tx doctors in the world over the last few years.... i do a lot of support work and have several friends in your area with pbc...

i pass through there in 2 weeks on the way to a pbc liver conference in toronto. i really dont feel that bad. i am a little moon faced and am up late... cleaning my home. lol but all and all i wouldnt know how sick i was if my eyes werent turning...

 
Old 09-03-2005, 10:03 PM   #7
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

i agree with you about the herbals and stuff... i have done so much support work for people with liver diseases and have seen the disastorous results of not taking the traditional medicine in favor of herbs. people dont realize drugs are often made from natural remedies... they also confuse natural medicines with being only good for you.... they dont realize how toxic some of these things can be in chronic illness. things like dandelion and grapefruit, minerals, can be harmful. there are so many things i cant have. when i do, i know how they irritate the organs. i am sure your dad does too. i do take vitamins, but even those are especially formulated to process through the sick organs. having been presented all the options i chose the cadaver option early on. even when i was not listed initially, i knew i would not deviate most likely... aih can return in some cases, because it is autoimmune not liver centered. i guess we will pray for the best. how old is your dad? sarah

 
Old 09-03-2005, 11:12 PM   #8
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

also, i love the cleveland clinic and i love my docs... they have been awesome! they havent screwed anything up yet either! the doc i chose was someone i had known for awhile through support work he helped with. i knew he was compassionate and smart and that is all i wanted! some of these docs are so hard to know and hard to read.... couldnt go that way!

 
Old 09-04-2005, 10:15 PM   #9
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Quote:
Originally Posted by OhioMOM
having been presented all the options i chose the cadaver option early on. even when i was not listed initially, i knew i would not deviate most likely... aih can return in some cases, because it is autoimmune not liver centered. i guess we will pray for the best. how old is your dad? sarah
We would have liked to do that, but, word pretty much was that if he was going to get a liver he should look for a donor. :/ If you're on the list, that's fabulous!!

The docs have told him its a virtual certainty that the new liver will also go AIH. But, that it may be a decade (if he is lucky) before he has to have treatment. Auto-immune diseases run commonly in our area we've heard, as does cancer... possibly from environmental contamination.

He's not that old -- mid 50s. Hopefully that will be a great help in the OR.

All the best!

 
Old 09-04-2005, 10:24 PM   #10
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Quote:
Originally Posted by OhioMOM
dr shaw stiffel was there for a long time and left for pitt... great doc! he built that program i think. i am using cleveland clinic. love them! they are very proactive and have recruited the best tx doctors in the world over the last few years.... i do a lot of support work and have several friends in your area with pbc...
That's fabulous.. I wish I felt that confident. Guess I'll see after the 15th what I *really* think! Cool that you do support work. Do you think that helps you be more positive about your own situation?

Quote:
Originally Posted by OhioMOM
i pass through there in 2 weeks on the way to a pbc liver conference in toronto. i really dont feel that bad. i am a little moon faced and am up late... cleaning my home. lol but all and all i wouldnt know how sick i was if my eyes werent turning...
I really love Toronto, or did 20+ years ago. Don't get there much since I've moved 500+ miles away.

Oh, ouch, yah, the prednisone is nasty in that way. My landlady (lives over my head) is also on it for an AI and she is HYPER. *Runs/stomps* around up there, sometimes late, somtimes early, sometimes both. Whew.

Gotta hit the hay! Have a great evening. :)

 
Old 09-05-2005, 08:22 AM   #11
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

i work with patients to find quality of care and navigate the system. i try to help them with their coping issues as well. most of the work is done through AL..... if you have any questions you want me to ask these docs i will. i will ask about brain stimulation....

i am not listed yet! hanging in there. positive attitude keeps it together. should they choose another facility you are fortunate to be in an area with faboulous liver docs... columbia, new england med center, lahey in boston, pitt and cleveland all have some of the best hepatology programs in the country.

i hope to rebound from this episode and work a couple more years prior to tx! through my PBCers i do a chat on line for people with aih overlap and will ask about the docs in your area all the best sarah

 
Old 09-17-2005, 04:25 PM   #12
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Re: hepatic encephalopathy: alternatives/additions to lactulose & low pro diet

Quote:
Originally Posted by rbmax7
I have not been to the board in a few month. I read your post and had to reply. My husband has end stage of liver cirrhosis. Short and sweet we have had four major bleeds. banding and last time 6-1-05 there was no way to stop the bleeding in the upper gi vessels. so they did the TIPS. Now he is supposed to always take the lactulose. He has hated that stuff for two years
and refuse to take. His dx came him a new med. called Xafaxin made by the Salix Co. They have made new studies with this drug and has proven to be very effective. He take 400mg three times a day. You do not have to stay in the bath room all day. He is really pleased with the results. Also it does keep the encephalopathy under control. Hope this helps and good luck.
rbmax7
rbmax7...
Thank you so much for this info! I just got back yesterday from an entire-family meeting with the transplant team and they also mentioned this drug. I'm very glad to have first-hand info about how well it works and the better side effects.
I'll be keeping you and your husband in my thoughts!!
Best wishes to you both.
...k

 
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