Hepatic Encephalopathy

[Albw]

Hi

Can you still have episodes of Hepatic Encephalopathy even if you are on medication? Is there anything else other than the med and lactose that can help it?

Any help would be great to know

Thanks

[Str8jacket]

It is possible. If you think that is happening check with your docs or go to emergency, HE can be life threatening.

In addition to Rifaximin and lactulose, I have heard of l-ornithine l-aspartate (prescribed in Europe as Hepa-merz), zinc, and sodium benzoate as sometimes useful for HE. You should only take any of these as prescribed by your medical team.

[Albw in reply to Str8jacket]

Thanks We think it might be in the early stages.

They are on the lactulose and rifaximin. Are they able to increase the dosage of rifaxminin?

[Str8jacket in reply to Albw]

That's for the docs to decide. Usually patients have some freedom to modify the lactulose as needed. Again, check with docs, and good luck!

[Roots57 in reply to Str8jacket]

It has completely left me. I probably didn’t explain that clearly. The background encephalopathy lasted up until I had a transplant. Saying prayers for your relative xx

[Roots57]

I had 3 serious episodes of encephalopathy but just before I received my transplant I was told I had background encephalopathy which meant it had never fully left me. I had difficulty processing information or remembering things. Thankfully I’m back to normal now

[Albw in reply to Roots57]

Thank you for this. Sorry to hear this. It’s not nice at all. I am glad to hear that you are back to normal now. Is there away that it can fully leave you?

Sadly my relative had liver cancer as well as cirrhosis and therefore can’t have a transplant. However we really want him to make sure he can enjoy as much as he can his time left as possible

[Richard-Allen]

Hello Albw,

There are sadly large gaps in knowledge and understanding among family doctors and gastroenterologists when it comes to understanding and treating Hepatic Encephalopathy.

This is very much the case over in Germany too (open this page in Google Chrome and select translate this page in English: medical-tribune.de/medizin-...

To understand this condition it is best to break down the actual words in HE. “Hepatic” means “of the liver, or relating to the liver”. Encephalopathy means “Damage or disease that affects the brain”. This is also best understood by looking at the “cause & effect”. The cause is a build-up of dangerous, toxic chemicals that are normally processed and made safe by the liver. These toxic chemicals then leak out into the blood system and travelling up to the brain. Here the effect is to bring about changes in mood, temper and thinking.

This condition is seen as being a liver-related issue and is often treated by prescribing lactulose to try and reduce the amount of ammonia being produced. Rifaximin and also Neomycin may also be prescribed. This course of treatment is a preventative treatment to stop the condition from getting worse.

Unfortunately, very little is done here in the UK to assess the amount of brain damage that has occurred, or how best to treat it. I could go on talking about how astrocytes become involved and cross over the blood-brain barrier and affect a person mood, but this rather nice video explains all this, for those who might be interested: youtu.be/v6h3pY2301g(Not working as expected?)

Some tests can be used, but not many GP’s are aware of these. There is a rather accurate, but simple test that is used over in Europe and some parts of the USA. This is called the “Animal Naming Test” (Once again this article is in German, but by opening it in Google Chrome and selecting translate this page in English it will help: medical-tribune.de/medizin-...

The other test that is finally getting some attention is called The West Haven Score. Here a patient is assessed by the GP or consultant, and an assessment of their condition is made as to what stage their HE condition might be at. The scoring is set from 0 - 4 and is as follows:

Grade 0: No personality or behavioural abnormality detected.

Grade 1: lack of awareness, euphoria or anxiety, shortened attention span, impaired performance of addition.

Grade 2: lethargy or apathy, minimal disorientation for time or place, subtle personality change, inappropriate behaviour, impaired performance of subtraction.

Grade 3: somnolence to semi stupor but responsive to verbal stimuli, confusion, gross disorientation.

Grade 4: coma (unresponsive to verbal or noxious stimuli).

More information about this can be found at Hepatic Encephalopathy – NICE: nice.org.uk/guidance/ta337/...

People who suffer from an HE episode may experience different traits, as no two people are the same. I know of a gentleman up in North Wales, who would lose all his inhibitions and take all his clothes off. My personal experience was one of frustration. I found that I could only concentrate on one thing at a time. If I was trying to thread a needle and was asked a question at the same time, I would explode as I just felt so overloaded.

If a person with HE has a carer or a partner who is there with them, in my book these are the unsung heroes of this liver disease journey. They can endure lots of abuse and tantrums. Evil words can often be spoken but never meant. A person needs to understand this mental condition and understand that it isn’t their partner being horrible and mean, but the result of the brain damage.

The subject of driving often crops up on here now and again, if the West Haven score was used in all cases of HE assessment, then anyone scoring a grade one or higher, should not drive. Having a driving license means that you have to follow the law. Every driver has to notify the DVLA if they had been advised not to drive, as they have been deemed to be medically unfit. For some people, this may seem hard. But people who have suffered an HE episode while driving, have been known to drive along the wrong side of the road on a motorway, thus driving into oncoming traffic, and they think nothing is wrong.

If a driver was to fail to inform the DVLA of this change in their medical condition and was to continue to drive, then they face a second driving offence of driving without insurance. If a person was to drive once they’ve been told not to, then their car insurance is no longer valid.

Finally, the quicker Hepatic Encephalopathy is identified the less damage can be done to the brain. Sometimes the brain can rewire its self and a person can get most of their faculties back again. But for some, some of this damage can be permanent. Many people who have gone on to have a liver transplant may still have some lasting issues post-transplant.

I hope this information is of some help, and the views I have expressed here are my own.

Best Wishes

Richard.