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Mon, May 13 10:06am · Elevated ammonia levels in Digestive Health

Thanks for posting this. In my case it is my husband and he damaged my relationship with some of his family. I was the problem. I tried to explain about the HE but was ignored. I guess that is easiest route to take for some people. Some relatives and friends stuck with him and I am grateful for that

Thu, Mar 14 9:48am · Elevated ammonia levels in Digestive Health

That is the problem. Xifaxcin has little effect now. It was very good. But it is different for different people. Lactulose is really the only thing that effectively lowers ammonia. This is through poop. The person that I answered has had surgery on his bowels. Laxatives for this person is scary but that is what this doctor wants to give him. The only drug out there that would help is Rivicti. There is also a lower cost version but the sodium in it causes blood pressure problems. Rivicti will lower ammonia through urine thus be easy on this person's digestive system. Doctors will not prescribe this only because of cost. This person has to ask for it.

Wed, Mar 13 3:24pm · Elevated ammonia levels in Digestive Health

Xifaxcin will help but not that much. Please ask your doctor for RAVICTI. It removes ammonia through the urine. It is extremely expensive which is why doctors will not prescribe it. But it sounds like this is what you need. I am trying to just get a prescription of it for my husband but doctors go deaf when you ask for it. The cost of this drug will not drop until 2025 when it comes off patent. I worked in big pharma research for 38 years and I am not sure how to get it. But I think you need it. Maybe if enough people push for it. Good luck to you. I will leave a message here when I am able to get it for my husband. So far all I got was a prescription for zinc something from the 1950's Try cutting back on protein but do not give it up altogether.

Sun, Mar 3 10:34am · Elevated ammonia levels in Digestive Health

@fcleaner1 I did not try going to a hepatologist which was suggested by @jk. I will see and let you know.

Tue, Feb 26 7:54pm · Elevated ammonia levels in Digestive Health

@jk You have been very supportive. Thank you again. You are correct. I think mobility is part of the recovery process. At this point in time my husband mobility comes and goes with his ammonia level. That is why I want the drug RAVICTI It would improve his condition and increase his stamina. Lactulose causes severe diarrhea and he is locked to his bathroom closeness. It also saps his energy Talked to 3 doctors now about this and all I get is that is not good and that should not happen. All I think when they say this is "what the what????"

Tue, Feb 26 2:18pm · Elevated ammonia levels in Digestive Health

@jk thanks for the reply. I have tried 2 different transplant center. My husband is 67. I know the cut off is 70. So I am really pushing for help. When my husband got really bad since last March, his liver doctor gave me the run around. Told me it was a sugar problem. His sugar doctor took a month to see and said it was not sugar, in fact his sugar was being very well maintained. So then I was told to try a neurologist, his brain is normal. I even had to go to another neurologist and he said the same thing. So I decided to go to the liver transplant center in Newark. He has no cancer, no brain problem but since last March he has trouble walking. High ammonia like I said. Newark said not mobile enough and was told not to come back. So I went to New York presy he gave me zinc which is a drop in the ammonia bucket. Zinc is from the 1950's
Thanks for the info on SRTR ORG. I will check it out. I really appreciate your sympathy.

Mon, Feb 25 8:24pm · Elevated ammonia levels in Digestive Health

I am very glad that you got a liver transplant. My husband was told that he was not moble enough and was rejected. Don't know what to do now. His ammonia runs high even with the lactulose and rifaxan. I guess they just want him to die.