Hepatic Encephalopathy - HE

[Trenz]

Hello HCV sufferers.  I recently had a bout of HE.  Spent a week in the hospital, the first four days which I can't remember. Scary stuff.  I am concerned that the only treatment they have me on is taking Lactulose.  It is supposed to keep blood ammonia levels normal which is what causes the HE.  I am having problems believing that taking a sweet syrup laxative is the only thing I need to do to keep it from reoccurring.  Anybody have words of wisdom on HE?  Thanks

I am geno type 1A...HCV positive for 25 yrs. Cirrhosis stage III. Just relapsed from Sovaldi, Riba, peg treatment.  Waiting on approval for Harvoni and Riba 24 wk treatment

[anniemybaby]

What is HE?

[Trenz]

It is Hepatic Encephalopathy

Hepatic encephalopathy is the loss of brain function that occurs when the liver is unable to remove toxins from the blood.

The exact cause of hepatic encephalopathy is unknown. Hepatic encephalopathy is brought on by disorders that affect the liver. These include:
•Conditions that reduce liver function (such as cirrhosis or hepatitis)
•Conditions in which blood circulation does not enter the liver 

[anniemybaby]

Omg that's really scary it almost sounds like sepsis does it cause permanent damage to the brain?  how do they remove the toxins from the blood? And what are the symptoms of having HE? Sorry for the questions but I never heard of that before I do work in healthcare as a cna in a nursing home but I never came across that

[Trenz]

Asking ?'s is why we are here!  The symptoms leading up to the "attack" were many and crazy.  Hands shake really bad, muscle spasms, trouble seeing, walking, talking, memory shot, my wife said my whole personality changed.   The last day I kept falling down. The third time I couldn't get up and couldn't reach my phone.  My wife found me passed out on the floor and called an ambulance.
 In the hospital they didn't do anything to remove the toxins, that's what has me a little freaked out. They gave me the lactulose to lower the ammonia level in my blood. Thankfully there is no permanent brain damage.  I actually felt the best I have for years right after I left the hospital.  That was two months ago and the fatigue, depression, loss of appetite, and insomnia are coming back.

[anniemybaby]

Oh my sounds really scary I wish you all the best

[Lynn K]

Hi Trenz
So sorry to hear about your HE here is a helpful link from the American Liver foundation

http://he123.liverfoundation.org/

and more info about Lactulose

http://he123.liverfoundation.org/treatment-basics/treatment-medications/lactulose/

Lactulose works by drawing water from your body into your colon, which softens stools and causes you to have more bowel movements. This helps lessen the absorption of toxins in your intestines and flush them out of your system. It also reduces the amount of ammonia in your blood by drawing the ammonia into the colon where it’s removed from the body via bowel movements.

How Should I Take Lactulose?

    Lactulose comes as a very sweet liquid that you take by mouth.

    Initial dose is usually 2 tablespoons (30 ml) taken 2-3 times a day. This dose may be increased to 3-4 times a day so that you produce 2-4 soft bowel movements daily. The dosage is based on your medical condition and your response to therapy. Your doctor will tell you exactly how much to take and how often.

    Measure liquid medicine with a special dose-measuring spoon or cup, not a regular tablespoon. If you do not have a dose-measuring device, ask your pharmacist for one.

    Some people find it difficult to tolerate the excessively sweet taste of lactulose. To improve the taste, you can mix your dose with one-half glass of water, milk, fruit juice or a soft dessert. To reduce the effects of gas produced by the lactulose, it may be preferable to avoid taking the lactulose at meal time.

    If for some reason you cannot take lactulose by mouth, it can also be given as an enema. Mix the prescribed dose with 24 ounces of water or normal saline. Administer the solution rectally and keep it inside for 30-60 minutes as directed by your doctor. If you keep the liquid inside less than 30 minutes, repeat the dose unless directed otherwise.

    If you forget a dose, take the missed dose as soon as you remember it. But, if it’s almost time for your next dose, skip the missed dose and continue your regular dosing schedule. Do not take a double dose to make up for the missed one.

    Keep the medication in the container it comes in, tightly closed. Store it at room temperature away from excess heat and moisture (not in the bathroom).

    The liquid may become slightly darker in color, but this is harmless. However, do not use the medicine if it becomes very dark, or if it gets thicker or thinner in texture.

How Can I Manage the Side Effects of Lactulose?

Diarrhea is a known side effect of lactulose –increased bowel movements are actually why it is effective in treating HE. But bowel movements don’t have to be increased to the point of uncomfortable diarrhea. The number of movements should be around 2-4 soft, controllable bowel movements per day. If you are having more bowel movements, you may be dehydrating yourself, and taking more lactulose than you need. Finding the right dose of the lactulose for yourself is the best way to manage the side effects of the medicine.

For more information about Lactulose side effects, consult your healthcare provider or call 1-800-GO-LIVER today.

Another medication that could be added is the antibiotic Xifaxan

http://www.hepatitiscentral.com/news/lactulose_and_x/

Xifaxan and Lactulose

The primary goal of HE treatment is to eliminate or neutralize toxins such as ammonia in the intestines. The first line of treatment is Lactulose, a synthetic, non-digestible sugar that treats constipation. Lactulose is broken down in the intestines into products that pull water out from the body and into the colon. While this water softens stools, Lactulose also reduces blood ammonia levels by drawing ammonia out of the blood into the colon where it is removed from the body. While being fairly safe and effective, Lactulose causes diarrhea.

By reducing bacteria in the intestines that make toxins the liver can’t process, Xifaxan (rifaximin) 550 mg is an antibiotic that can help reduce the risk of HE recurrence in adults with liver failure and reduce someone’s chances of being hospitalized because of hepatic encephalopathy. According to the company’s website, Xifaxan 550 is often prescribed together with Lactulose for managing HE. Unfortunately, Xifaxan 550 is not always covered by health insurance companies, is extremely pricey and, like most drugs, is associated with side effects such as:

    Bloating, gas and stomach pain
    Defecation urgency
    Feeling like the bowels are not empty
    Nausea, vomiting and constipation
    Headache, fatigue and dizziness
    Swelling in the hands, feet or torso

HE is one of the more frustrating conditions that can result from chronic Hepatitis C infection. Because it can dramatically detract from quality of life and progress quickly to an emergency situation, physicians take hepatic encephalopathy seriously. Especially because there are helpful medications available – like Lactulose and Xifaxan 550 that can help manage HE – discussing any changes in mental status or intellectual functioning with a doctor is crucial for those with advanced liver disease. Taking these drugs may not eliminate fatigue, forgetfulness or confusion, but they are valuable to susceptible individuals for preventing hepatic encephalopathy from progressing to one of its later (and dangerous) stages.

Lactulose is the primary treatment for HE it is sweet because it is a type of sugar but is indigestible. You can mix with water to help with the flavor Kristalose is a powdered form of lactulose and I hear that it is easier to tolerate. But is also more expensive so your insurance may not cover it.

Good luck

[Trenz]

Thanks Lynn.  Insurance disapproved Xifaxan which I hear is pretty typical.

I don't have any problem taking the lactulose, the tricky part is taking the right amount at the right time!  They even have a word for figuring that out, titrate.

I'm surprised that more people on the blogs haven't experienced the joy of HE. I really hope the new drugs slay the dragon and nobody has to 

[Lynn K]

On the other group I am a member of it seems like a lot of them are more advanced cases than here so that was where I picked up on the info. HE is my greatest fear. Good luck with your titrating

[Trenz]

My treatment manager said the HE is why I'm classified as having decompensated cirrhosis and that is why they want to do the riba with the Harvoni.  24 weeks.  This is my third time with riba and I don't know if I can take 24 weeks of that crap. I already have fatigue, depression, and insomnia.

[DREJ]

Trenz;

I too had HE in Nov '13.  Was on Lactulose at the time.  Came on without any warning.  Was in hospital for 7 days.  Kidney function went crazy.  Was stage 4 cirrhosis already.   Had a second attack in Jan '14.  Was on Xifaxan and Lactulose when I had second attack About the only thing you can do is stay on a low protein diet and keep with the Laculose.

Have you been evaluated for a transplant?

Don

[Lynn K]

Hi Trenz

When you have been diagnosed with cirrhosus you are considered compensated until you have a decompensating event such as HE or major ascities. So by defination you are decompensated unfortunately.

Are you under the care of a hepatologist associated with a transplant center? As Don asked have you been evaluated for transplant? Do you know your meld score or child pugh score?

Sorry you have had all this happen you too Don. I am also on 24 weeks and after talking with my doctor we decided to add riba finally got the riba at week 10 so I am doing 9 weeks Harvoni alone and 15 weeks Harvoni ribavirin. I just finished week 2 on riba. I have had cirrhosis for 7 years and developed esophageal varicies hat required banding and also have a small amount of ascities so I am borderline on the edge of decompensated that was why I said HE is my greatest fear.

Good luck on treatment I will be watching for your posts

[Trenz]

Hi Don & Lynn.  I'm under the care of the Einstein Liver Disease and Transplant Center in Philly.  The crazy thing is my liver function test are not that bad.  My MELD score is only 11.  I had a liver ultrasound this am and I expect to be starting the Harvoni & Riba treatment after they get results tomorrow.

[DREJ]

Trenz,

Keep close eye on that meld score.  It can change quickly.  I was having labs monthly and got to 14 in no time.

On a another note, if you can shake the Hep C -  "Gilead Sciences Incorporated’s drug Simtuzumab targets fibrotic scarring directly, reversing cirrhosis and improving liver function. Gilead expects to have a strong indication of whether its drug is working when one-year data from a two-year Phase II study becomes available next year." 

Don

[Lynn K]

Liver function tests mean little they only indicate your liver is under attack and being damaged but not how much damage has occurred. Some can have high liver test numbers but little damage and others like you and me can have low liver enzyme levels but have cirrhosis.

I hope that helps

[Lynn K]

Wow Don that is great information I will have to keep my eyes on that med I basically figure I have a rock or big piece of gristle where my liver should be

[DREJ]

Lynn K

Knowing Gilead they'll want $2000 per pill.

Don

[Lynn K]

Well of course they will

[Trenz]

Don...thanks for the info on Simtuzumab (where do these names come from!) I hadn't heard of it and anything promising in the pipeline is encouraging.

Lynn...I think LFT are very meaningful as Bilirubin and INR numbers are 2/3 of the formula for the MELD score.  My hope now is the Harvoni-Riba works and then this Simtuzumab develops and works and I never have to worry about a MELD score or transplant.

[Lynn K]

Sorry about that.I thought you were only referring to ALT and AST as many perple do think that about them.  But they aren't even used as you say in computing MELD score.

Yes INR, Bilirubin, & Creatinine for the MELD and Albumin if you are looking at the Child Pugh are very important indicators of you status.

I was only thinking of the the LFT while Creatinine is reported on the Metabolic Panel and INR is reported on Protime test at least that is how my results are reported.

My LFT is called a HFP Hepatic Function Panel I guess they changed the name of the test at some point.

Sorry for my confusion.

Yes I am hoping beyond hope his treatment number 5 is my last. If this treatment with Harvoni and Riba doesn't work this time I am worried about running out of options and out of time. And if it does I can watch for things to help with advanced fibrosis like this new strangely named Simtuzumab.

Best to you

[DREJ]

Trenz

I think the grab a handful of scrabble pieces and throw them on a table. LOL

The ultra sound you had today can tell you a lot. Another blood test you can request is an alpha-fetoprotein.

A test that they have come up with lately is called Acoustic Radiation Force Impulse imaging (ARFI). "The ARFI technique uses focused, high intensity sound beams to produce “push-pulses” that generate shear waves (secondary waves that extend in a direction perpendicular to the direction of the push pulse) within tissue and then monitors the tissue response with ultrasonic methods. The tissue response is related to the stiffness properties and structure of the liver, and is displayed as high resolution, qualitative elastographic images of the liver. The speed of the shear waves is proportional to the stiffness of tissue; thus ARFI can also produce quantitative stiffness measurements based on the speed of the shear waves. These measurements are used to quantify specific levels of fibrosis that can be used to classify different stages of liver fibrosis."  The benefits are no hole in your side, no possibility of internal bleeding (especially if your INR is high) and they can score the whole liver vs. biospy of very small piece.  Also much cheaper, making insurance CO's more inclined to pay.  It does take a special machine and not all hospitals have them.

Don

[Trenz]

Below is another advancement in doing away with liver biopsy

Detecting liver disease at early stages
More comfort for the patient, better accuracy for you, Magnetic Resonance Elastography (MRE) is a new diagnostic imaging technology that can detect hepatic fibrosis using sound waves. The procedure is completely non-invasive, making it easier on the patient, eliminating the potential pain involved in biopsies or resulting hospitalization for complications while it gives you the best visual representation of liver disease possible.
The standard of care for detecting chronic liver disease and fibrosis has been a biopsy. But now, there is an effective alternative—elastography. The technology works by using a transducer that emits low-frequency sound waves as it sits over the patient determines the elastic properties of the tissue. Those impressions are then collected and a sophisticated mathematical algorithm is applied to create images that show the extent of the fibrosis. This vivid visual representation is called an elastogram.
⦁   MRE gives patients a comfortable, pain-free method for detecting liver disease. The procedure:
⦁   Is completely non-invasive
⦁   Can find liver disease sooner
⦁   Does not use contrast or ionizing radiation
⦁   Eliminates the pain and potential complications from the biopsies
⦁   Allows for more frequent monitoring of liver disease
⦁   Holds the promise of better outcomes
Developed by physicians at the Mayo Clinic, MRE has been FDA approved and offers Bayhealth physicians many advantages.

[Lynn K]

wow you guys both have a lot of great information thanks!

The best test I have had so far other than 4 liver biopsies over the years is a fibroscan last fall so much better than a biopsy. I am only MELD 8 due to my INR of 1.1

Have you both had upper endoscopies and had the pneumonia shot?

I am having an upper endo next Friday 2/13 to check for any recurrence of varicies.

I go to Swedish Hospital in Seattle to their Liver Clinic. They also have a Liver Transplant center there.

[Trenz]

My memory is pretty much shot but I know I had a pneumonia shot and I think it was about 5 yrs ago.  I'm 61.
I had a EDG about a year ago and had mild ascities. I took Lasix for a while but is was discontinued after about 6 months.
I really need to keep better records and document stuff better since I've seen about 10 Drs in the last 3 yrs and now have CRS
It's almost 2am,  time for my nightly fight for sleep.  My brother is trying to convince me I need to get medical marijuana to help with that.

[Trenz]

Just received results of ultrasound I had yesterday. It doesn't state anywhere in the report the stage of cirrhosis which is what the insurance company wanted. UGH!   Below are the findings...
Impression-
 1. Findings suggestive of hepatic cirrhosis and portal hypertension. No focal hepatic mass or biliary ductal dilatation identified.
 2. 6 mm nonobstructing left renal calculus.
 3. Limited evaluation of the pancreas due to overlying bowel gas
 4. Splenomegaly.

I'll have to call treatment manager to see what's the next step.

[Lynn K]

As I understand it your ultrasound shows evidence of cirrhosis. To stage cirrhosis I think is compensated or decompensated or also there is the Child Turquotte Pugh score similar to MELD you can be a Child "A", "B" or "C" with child A being compensated that is all I have on this. I am sure your doctor will clarify this for you.

[Mike]

Hi Trenz,

The report states "Findings suggestive of hepatic cirrhosis and portal hypertension."

"Suggestive" in medical terminology means "this looks like", "probably is", "more likely than not", "appears to be" and so on.

The report indicates progression beyond fibrosis (grade 1-3).

Best wishes, Mike

[Trenz]

Hi Lynn.  I often have problems figuring out medical terminology.  On previous ultrasounds and biopsies, they have shown stage II or stageII/III cirrhosis. I just googled it and it looks like they are now shown as stages 1,2,3, or 4. Go figure.
   
Hi Mike.  Is it the "hepatic cirrhosis and portal hypertension" that  indicates "progression beyond fibrosis (grade 1-3)."?

At this point I am so frustrated with the verbiage and semantics that I am going to turn it over to the Drs and do whatever they say is next best thing I can do to survive.

Peace

[Lynn K]

I have never seen staging from an ultrasound report only exactly what you have on yours.

I have seen on the Livestrong site stages 1 through 4 but from what i read there it looks like they are describing F1 F2 F3 and F4 which is certainly misleading.

I did find this article from the National Institute of Health which seems to be very interesting material on the subject
"Now There Are Many (Stages) Where Before There Was One: In Search of a Pathophysiological Classification of Cirrhosis"

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2882065/

Curious where you are seeing 4 stages?

Thanks

[Mike]

A hepatic ultrasound is a an image study of the liver.

A hepatic ultrasound can identify the presence of tissue consistent with mild, moderate and severe fibrosis as well as detect growths & tumors (focal masses) within the liver. An ultrasound can also study hepatic blood flow, as well as tissue consistent with fatty liver and cirrhosis.

An ultrasound study is usually reported in two sections: findings (what the images show) and impression (what the radiologist believes the images represent). 

If an ultrasound report indicates findings consistent with cirrhosis, it can be implied, by default, that the radiologist has ruled-out imaging consistent with mild, moderate or severe fibrotic tissue (grade 1-3 fibrosis).

Best wishes, Mike

[Lynn K]

Hi Mike

So what about staging of cirrhosis? All that I have heard is compensated vs decompensated cirrhosis and further described as Child A, B or C.

Can an ultra sound define those differences in degree of cirrhosis? And if not are they defined by Child Pugh score? Or by some other criteria?

Thanks

[DREJ]

Lynn K & Trenz & Mike

From what I understand, scoring CAN be done with the new ultrasound I described below (per my gastro at the transplant center).  That was one of the requirements the my insurance CO required to be approved for Harvoni.  They backed off when I wrote them a letter disputing their refusal to provide it.  According to him, they can stage fibrosis (1,2,3,4) cirrhosis (1,2,3,4). 
The difference between comp vs decomp cirrhosis is with compensated cirrhosis you may have no symptoms at all suggesting anything is wrong, or a few of 1) feeling tired, 2) loss of appetite or feeling sick, 3) tenderness around the liver.
With decompensated, when your liver is no longer coping with its functions, you will have more obvious symptoms and side effects such as jaundice, ascites, itchy skin, oedema, varices, portal hypertension, change in bowel movements, sleep disturbance, confusion or forgetfullness, dark urine, tremor, intolerance of alcohol, problems with medications.

I have had 3 upper GI's for varices.  Called Esophagogastroduodenoscopy (EGD) (talk about a scrabble word).  They will give you a sedative and run the scope down your esophagus to check for the varices.  They will put a band around them, if necessary.  If you want to know more about mine, let me know.  Word of warning, watch out for black, tarry stools.

From what I have read, the difference between ARFI and MRE, is MRE is more sensitive to mild fibrosis.  Draw back to MRE is a modified MRI machine (in the tunnel and much more expensive)  The ARFI is a modified ultrasound maching (no tunnel and cheaper).  It seems that both are good at scoring advanced fibrosis and cirrhosis.

Had my 4 wk labs drawn today.  Should have results by Tuesday.  Hoping for UND.

Don

[Lynn K]

Hi Don

Medical terms a great for scrabble lol!

I am having an upper endo next week to check for recurrence of varicies as I had varicial banded in 2012 due to grade 3. Mine were asymptomatic no bleed no red whale marks so were were being proactive to prevent a bleed from occurring. I guess I have had about 9 or 10 Upper endoscopies since 2008. Four were for the bandings and since then a 6 month then annual for surveillance.

I am thinking there may be differences in abdominal ultrasound machines. The one they use with me is the same as they use for pregnant women.

Even though I have lower leg edema and a small amount of ascities for which I take Spironolactone 50 mg daily only, and had the varicies form, my Child score is A and Meld is 8 so my doctor considers me borderline between compensated and decompensated.

Go figure

[DREJ]

Lynn K

My first one was in '03.  I had burbed up some blood.  I had a varice that was leaking.  That was before I understood about black, tarry stools.  Got to the hospital and doc was going in to band it, and it burst.  Doc said the OR was covered w/blood.  Lucky I was there when it happened.   He was able to band it. Spent 2 days in ICU and another 2 in regular room. Pretty close.

Second one was when I was having an ERCP in '10 after 1st transplant.  Billiruben numbers were bouncing and they thought I might have a stricture in common bile tube.  Banded, but because of the dye used got severe pancreatitis.  ICU for a week, 2 weeks in reg room and 2 months on TPN.

Third was a in '13 before second transplant.  It was a breeze.  Had a stage 2 that didn't require banding.

The ultrasound I was referring to is different than regular US and doppler US.  It's pretty new.  I went to see my gastro at transplant center on 10 Dec '14 and he had just pitched that day to the money people at the hospital to buy one.  They are supposed to get it in March.

Don

[Lynn K]

Wow you have definitely been there and back again. Hoping my 3 year post banding endo next Friday continues to show no reoccurrence of varicies.

Thanks for clearing up we are talking about different equipment in regards to ultrasound devices. I guess ours can only confirm that the liver appears to agree with an existing diagnosis of cirrhosis

Congrats for making it through your many challenges and yeah sounds like you were extremely lucky to be in the hospital when the first one burst.