Hepatic encephalopathy

[Boysanboys59]

Hi, I've just been diagnosed with ist stage hepatic encephalopathy(he) for short, has anybody on here got this, as well as p b c . Any information would be helpful, thanks .

[Jorge4liveraus]

talk to your doctor about antibiotics and lactulose

[Boysanboys59]

Than you for your repliy, I'm on lactoloose twice daily. No abs. Have you h e as well as p b c . I'm early stage but hate to reliy on the net for info, would like someone with it to explain how the disease progresses. If poss .

[GrittyReads in reply to Boysanboys59]

I'm afraid I cannot help with these topics. However, if you don't get more responses, today, then I would try re-posting your question later in the week. Far fewer people check in here at weekends and as your question is fairly specialist you might reach a bigger group and greater cross-section on weekdays.

Maybe give more details: medication, how long had, what medics say, etc.

Or, contact the 'PBC Foundation' and talk to their advisors - link at top of the page.

hope you get some help.

[Boysanboys59 in reply to GrittyReads]

I am urso intolerant, waiting for the new drug, so take nothing. ,

[Boysanboys59]

Thank you for answering, I've had p b c for 7 yrs. I'm female 57 yrs. just been to see my liver specialist and this came back on the letter you get afterwards., so looked it up, thought oh god that's all I need on top of everything else, no explanation in clinic nothing,gp , s seen to know nothing much about anything so thought I'd post on here,I will indeed post it again in the week, thank you for takeing the trouble to answer me, apparently is caused by my p b c .

[Angel_b]

Hi sorry I don't know much about HE but might be worth asking on the British liver trust too. I'm sure I've seen it mentioned there before.

Hope you find the answer soon.

[Boysanboys59 in reply to Angel_b]

Thank you I will .

[Shulsey]

Hello, I can give a bit of a explanation for this. Im on a very strong antibiotic called Xifaxan 550mg twice daily for this. Some of us PBC'ers like to call it "brain fog". It's basically where your liver can no longer filter out the ammonia in our blood & the build-up of ammonia effects the way we think. This antibiotic helps to break it down in our bloodstream. Have you been getting confused & forgetful more than normal? This usually happens to those of us at stage 4 PBC. Mine is really bad in the evening, after a long busy day.

[Boysanboys59 in reply to Shulsey]

Hi, thank you very much for sharing your knowledge with me, I'm forgetful and get confused on and off. Forget what I'm saying in mid centance and can't multi task anymore, gruu, I call it not on the planet, as far as I know I'm still in stage two, had s liver biopsy 5 yrs ago. I can't take urso tryed on and off for 7 yrs. now waiting for ths new drug, keep forgetting what it's called.hes put me on lactoloose for last 8 months , no tablets yet,I have good weeks and bad ones, my fatigue will just hit me no warning anytime and I feel exhausted,how does the h e affect you And has yours progressed cince it was diagnosed, how long have you had it, many thanks, Julie

[Shulsey in reply to Boysanboys59]

I forget in mid sentence & have a hard time concentrating. I can no longer multitask as well. I just recently started the antibiotic but had been forgetful, more so than normal, for the past year. I progressed rather fast from stage 2/3 to stage 4 because the Urso was no longer working on its own. The new specialty drug is called Ocaliva. My heptologist had been battling with my insurance since the end of April to get it covered. It's scheduled for delivery in the 9th. Praying it helps. I've had multiple biopsies over the years. Now they do the scan where they can take pictures so well that they can see the texture of the liver which, from what I understand, is how they determine where we are in this disease. Once you're placed on a medication for the "brain fog" it'll ease up & you won't forget as often. I still stumble over my words & forget things that are right in front of me, I even forget why Im standing in the kitchen after walking in there for the fifth time to grab something lol. It isn't throughout the day like it was before the antibiotic. I still struggle in the evenings some, when Im super tired.

[Boysanboys59 in reply to Shulsey]

Hope your insurance covers the new drug for you and pray also that it helps you feel better, confused why my liver specialist only gave me lactoloose( awfull stuff) he's not very good at explaining things to me he just listens. When I ask he says you wouldn't understand and that's what we're here for is to look after you, I'm not sure if my p b c has progressed or not, he just said my bloods this time hadn't altered only high enzimes were different, you could be describing me in the things you do, p b c seems to have many side kicks to it. ( happy days ) are you on the transplant list or just being monitored. I also have very bad ostioarthritus so don't work , must be hard for you, your knowledge much appreciated , wish you all the best. Julie

[Shulsey in reply to Boysanboys59]

The next time your Dr says "you wouldn't understand" ask him to explain it in terms to where you could understand. It is your body & you should know what is happening to your body. My heptologist is awesome when it comes to explaining things on my level. I keep a small journal for questions to ask so I don't forget them at the time of my appointments. Plus any new "feelings" that may arise. No, Im not on a list yet. Im told that my transplant numbers are really low right now & that there are people who have extremely high transplant numbers who are currently waiting for that good liver. By the sound of what you're telling me, I think you've progressed to a different stage of PBC. It's the Urso that keeps your enzyme levels where they are supposed to be. Like I said in my last reply, I've progressed quickly from stage 2/3 to stage 4 because the Urso stopped working. I would be looking for a different Dr or at lease someone who can give you a second opinion. You haven't been on anything the past 7 years to keep your liver enzymes where they need to be, this is why they are high. You need something for that. Is it the Ocaliva that they are wanting you to try? In my experience with PBC & doctors, if they tell you that you wouldn't understand, it's because they themselves are not very educated in PBC.

[Boysanboys59 in reply to Shulsey]

Hi, sorry repliy took so long, I fell asleep came over so tired all of a sudden and couldn't stay awake, does that happen to you. Poor hubby got no tea forgot to take out of icebox. Thank you foryour advice . I'm now going on a complain binge, had enough living in the dark, need to know more and understand more like you said, as I have many health issues I find it hard to separate them into what symptoms belong to what complaint, and you are right about the gp,s they haven't any knowledge on p b c probably less on h e , joke when you think our life's in there hands. Ocalvia is not released yet in the U.K. But my liver specialist wants me to try it when it is. And 7 yrs s long time for p b c to progress. I feel it has but the specialist says bloods same as last yr and only my enzimes have risen , so sorry yours has progressed so fast trouble is with p b c there is no time limit, hopefully ocalvia will help us both. Wishing you well , and thank you , you have helped me very much , Julie x

[Koinonia]

Hi Boysanboys69, I don't know about "stages" but I have been diagnosed with "mild" H£. I am taking Rifaximin tablets and am taking part in a research project. I also have PBC but have no trouble with Urso. I had AIH for many years which developed into AIH/PBC overlap and now the AIH has "burned out".

Apparently my liver is not cleaning the blood effectively and so the toxins go to the brain.

resulting (for me) in forgetfulness and muddle sometimes. I also find it difficult to do mental arithmetic, get frustrated , niggley etc I also take Lactulose and do not eat red meat (too many toxins !)

Do you see a Hepatologist regularly? If not perhaps y our GP/Doctor would refer you if you ask. I hope you will get some medical advice soon.

n

[Boysanboys59 in reply to Koinonia]

Hi , thanks for repliying, all knowledge is good, I also have mood swings( according to hubby ) but my liver specialist just prescribed lactoloose. Whitch give me bowel pain, I'm one of those people who are intolerant to most drugs, and have very nasty side effects, so useuall just suffer illness as meds make me feel worse. Can't even take painkillers( groannnn) not good as I have ostioarthritus as well, ive had p bc for 7 yrs , my liver specialist hasn't said it's progressing. I'm stage two after biopsy 7 yrs ago. I found out I've got early he after my last consult came back in letter you get afterwoods , so have to wait till next consult to discuss this with him. ( hate that !!) hopefully it won't get any worse. Kind of everyone with knowledge of he to answer makes you feel you are not alone, as I don't remember reading of anyone else with it. Who also has p b c . Wishing you well . Julie

[Hidden in reply to Koinonia]

Koinonia what does it mean that your aih burned out? Is that a good thing? I also have pbc/aih

[Koinonia in reply to Hidden]

My Hep told me it has ceased being active, I no longer have to take any meds for it. I think it's a very good thing! The Hepatic Encephalopathy is not so good though!!!

[Hidden in reply to Koinonia]

Koinonia,

It stinks for me because I have pbc and aih, the meds for aih is brutal

Are you in cirrhosis?

Does this also mean that you can still get the side affects for it

How long did you have aih for

[Koinonia in reply to Hidden]

Hi Jenny,I had AIh for a very long time--probably over 30 years When it was diagnosed I already had cirrhosis. Sorry I can't be more specific. Although the AIH has"burnt out" I still have crrhosis which has led to Hepatic Encephalopathy. I have to take Lactulose and Rifaximin for that ,plus Urso for the PBC

Everyone is different so don't expect to have the same as anyone else, just cope with your own problems with the help of your Specialist.

Best wishes Diane

[Hidden in reply to Koinonia]

Koinonia. I'm stage one early fibrosis. Pbc/aih. I am taking azathioprine 50 mgs and prednisone down to 20 mgs. I really need a break from the prednisone and azathioprine. I'm following my doctors advice. I'm concerned that I have H.E but it seems that it strikes in later stages. I'm 53 years. I would forget my rear if it wasn't attached, I'm constantly repeating myself. But oh well. I was just diagnosed a few months ago and my Dr says I'm going to be ok. I'm not ok if I'm sleeping to much and fumbling for words. Because I can't think of a word or object. Maybe it's the meds. Dr is lowering my prednisone next week and I'm praying to god that he doesn't raise my azathioprine.

I named my azathioprine and prednisone, being half Italian and Irish I can't tell you what I named the little effers. Lol

I'm trying, I really am. We all are

[Hidden]

As others here have indicated, you need to get your doctor to explain HE to you - I am Stage 4, and have bouts of HE (not nice) and my doctor has prescribed Lactulose for it.

Here is a link to a site with information about Hepatic Encephalopathy:

medlineplus.gov/ency/articl...

[Boysanboys59 in reply to Hidden]

Hi, thanks for your repliy. And the link. I'm makeing an appt with my gp. Who probably knows as much as I do ?!? My h e can be very bad feel as if I'm on another planet sometimes, I'm only takeing lactoloose no abs. I'm stage 2 or was 7 yrs ago. Wishing you well An thanks . Julie

[4pjx__]

I have pbc. The last time I had a blood test my doctor said my amonia levels were a little high and prescribed tg e lactalose. Apparently it's very common in people with liver disease. She asked me if I had trouble remembering things. I don't think I have any more trtrouble remembering things than the next person. I was recently on a trip with my sister and her husband and they had more trouble remembering some things than I did. If it's doing me any good I can't say. They seem to make me windy which is about the last thing I need.

-Pam