Lactulose

[andyhawaii123]

Hi everyone. I'm looking for some input from everyone taking Lactulose Oral Solution. Should you take it before or after you eat a meal. There seem to be mixed views. Here's what I've been doing:

          8:00 am - Harvoni on empty stomach, before breakfast, 1/2 hour before other meds.
          8:30 am - All of the rest or my morning meds while I'm eating breakfast
          9:00 am - Morning dose of Lactulose

I do this because I don't want the Lactulose to push thru my meds and not absorbing them. Is this correct or should I be taking it before I eat?

I thank all of you for discussing the questions I post. The sound information everyone give here is top notch
Thank you all.

Andy

[andyhawaii123]

Dede,

I'm with Heart in the Keys, With liver disease it is so had to keep a proper sodium/potassium balance, you end up dehydrated all the time. You don't even have to be exerting yourself. I get them bad when I wake up in the morning and in the late afternoon (when I'm out and about and forget to KEEP DRINLING PLENTLY OF WATER). I drink two large glasses if ice water and the headaches go away. And I strongly recommend never drink Soda or Rev Up drinks like Red Bull or Monster (they are the worst for added sodium).

I've never had high blood pressure (Excluding my Portal Hypertension) so I really can't comment one way or the other.

Keep us posted.

Wishing you the Best,

Andy

[heart_in_the_keyes]

I have HE but you would never know it according to anyone I know.  I have no typical symptoms and am questioning the monthly cost of the Xifanan.  

High or low blood pressure along with dehydration will cause headaches.
Have your blood pressure checked.
Make sure you drink plenty of WATER daily.

Anytime I start to get a headache I will start to hydrate and make sure I took my blood pressure pill.  

The anxiety that you are putting yourself through constantly tracking every step could be causing you to elevate your blood pressure.

[Dee1956]

This is very good information, thank you all for sharing.

When I was taking Lactulose I took it with a meal, it didn't seem to bother my stomach as bad and I didn't have problems that way.  It did take a little time to get it balanced.

I took 2 tablespoons after breakfast and dinner.

I appreciate all of this information very much
Dee

[andyhawaii123]

Hi Debe, Glad the Lactulose kicked in for you. As I mentioned earlier, I track 14 symptoms of HE on a weekly basis. It's very important to me because I may feel some symptoms one day, and others the next - but while its going on you can miss them due to the mental state caused by the condition. (It also helps if you have a roommate or close friend who is aware of these symptoms, because odds are they will see them in you way before you do).

With that said, I take a blank excel worksheet, list the symptoms down the left side column, and then on the same day every week I rate each one with a 1-10 (1-least 10-Most severe)  in the next column. Each week gets it's own 1-10 rating column. I total each column. I then go a step further and transfer the totals to a line chart (KEEP IN MIND A WEEK ABSOLUTELY SYMPTOM FREE WOULD EQUAL 14, SO !$ IS YOUR BASELINE ON THE CHART): The first 7 are Mental Condition, the next 7 Physical Condition

Like This:
     Mental
Forgetfulness:              
Generalized Confusion:
Exercising Poor Judgment:
Nervousness/Excitement:
Disorientation/Not Knowing Where You Are:
Inappropriate Behavior:
Personality Changes:
     Physical
Musty or Sweet Breath:
Disrupted Sleep Patterns:
Worsening of Handwriting:
Loss of Small Hand Control:
Shaking of Hands or Arms:
Slurred or Troubled Speech:
Slowed Gate/Clumsiness/Sluggish:

Total:

Many of these symptoms, by themselves, can all be normal side effects of a damaged liver. But by looking at them collectively on a regular basis, patterns, increases and decreases in symptomology will become very apparent, It has helped me greatly, because I am able to see the very subtle onset of symptoms. If you can present clearly, in a timely manner, what exactly is going on, you doctors will be able to help you early and appropriately. Usually it's just an Adjustment to your Lactulose. I also take Xifaxan for my HE. Xifaxan (A long term Antibiotic) when combined with my Lactulose therapy, have brought my HE symptoms way down (With the TIPS by-pass Shunt I am extremely susceptible).

I hope this helps you a little more than Wiki-Pedia. Keep us posted. If you'd like me to email you a Excel template, just message me.

As always, I wish you the best

:

[HectorSF]

Hi Debe.

Headaches?
Headaches are not a symptom of HE.

As mentioned above the latest information on Hepatic Encephalopathy from the American Association for the Study of Liver Diseases (AASLD)
is available online at ..
http://www.aasld.org/sites/default/files/guideline_documents/hepaticencephenhanced.pdf

The symptoms of HE are listed on page 47 of the Practice Guideline..
"TABLE 2. WHC ( the standard West Haven Criteria) AND CLINICAL DESCRIPTION".

Grade 1
• Trivial lack of awareness
• Euphoria or anxiety
• Shortened attention span
• Impairment of addition or
subtraction
• Altered sleep rhythm

Grade 2
• Lethargy or apathy
• Disorientation for time
• Obvious personality change
• Inappropriate behavior
• Dyspraxia
• Asterixis

Grade 3
• Somnolence to semistupor
• Responsive to stimuli
• Confused
• Gross disorientation
• Bizarre behavior

Grade 4
Coma

Hope you feel better.
Let your doctor know that you are experiencing the headaches.
Hector

[HectorSF]

Andy, keep doing what you are doing! It is obviously making a difference. Going from a MELD of 24 to 7 is awesome!

As far as liver cancer (HCC) is concerned...since all folks with cirrhosis have an increased risk of developing liver cancer it is prudent for all patients with cirrhosis to undergo periodic cancer surveillance. Every 6 months. As with most cancers early detection and appropriate treatment is critical for the best outcomes. Surveillance should continue for as long as someone has cirrhosis and for a number of year after their cirrhosis resolves itself as there continues to be an increased risk of developing liver cancer once cirrhosis has developed, although the risk is much less than the risk while someone has cirrhosis. Further studies in this area are being done. Many folks now with hep C caused cirrhosis have been and are curing their hep C so it is more important than ever to understand how long these folks are still at higher risk for HCC after their cirrhosis reversed itself.

Note: While there are "treatments" for liver cancer (HCC). For those of us  with cirrhosis and portal hypertension these treatment are only "palliative treatments". They are not curative. They are only used to manage the cancer until the patient is able to get a liver transplant. The only "cure" for  those with advanced cirrhosis (cirrhosis and portal hypertension) and liver cancer (HCC) is a liver transplant.

The good news is most people with cirrhosis don't ever develop liver cancer so there is no reason to worry unnecessarily. Besides worrying won't change anything except produce unnecessary stress that none of us needs. Just do your routine tests as instructed by your transplant center and you are doing all you can and need to do.

Keep up the good work!

7 weeks since EOT my hep C treatment. Still undetectable! Valentines Day if I am undetectable I will be declared cured!!!
Fingers crossed.
Hector

[Dbzc2]

Hi Andy, I am finally even keel with Lactulose --it took three months! I take Lactulose around 5am 30 ml and then at night around 8pm 30 ml. I take my oral meds at 9 am and then nite meds at 10:30 pm.  Seems the Lactulose is working and my meds (pain meds too, so I can tell.). So, I guess like you I worried about the Lactulose messing with my meds.  It seems either meds before by an hour and a half, or meds after by several hours would prob be the best times?

I'm just glad the darn stuff is finally at a dose that doesn't gave me playing catch up!  

So for all of the HE people who have responded here, are headaches a part of HE too?  For the first time i am having regular bouts of headaches--despite being on pain meds.  I used to have migraines, but since pain meds no headaches of any sort until Lactulose due to HE.  It's not every day, but perhaps 2-3 times a week typically in the afternoon. Top of my head and around eyes.  

My HE has not yet improved, I think it has worsened? I see hepatologist next week for a big discussion, as I just had my blood work and ultrasound done today. Cirrhiosis and enlarged spleen were confirmed for me today. I couldn't get much more from the u/s tech.

Thanks and sorry Andy for adding a question to your discussion. I hope you don't mind.

Best, Debe (dbz)

[andyhawaii123]

Thank you so much for your response Hector. I will most def. check out the recommended websites, I am sure they will be very useful.

Eight months ago, with a MELD of 24, I was ready for transplant. After all I've been thru I should be 6 feet under, but with Absolute Proper Diet, Strict Medication Adherence, Regular Daily Exercise, Not Drinking and learning as much as I can about my condition, I have brought my MELD down to 7. So I'm registered on the List, but not actively waiting.  And I'm with you...their biggest concern with me now is the "C" word.

I discussed the issue with my Doctor, and he had good news. Should it start to develop, they can treat it very precisely with an Interventional Radiologist administering Cancer Killing agents directly to the area, with a minimal amount  Nuclear Medicine. That's what they're doing at the UCSD Liver Transplant Center. I am Scheduled for testing specifically for Liver Cancer very six months. It looks promising, should it occur.

Thanks again for your help. And, as always, I wish you the best.

Andy

[HectorSF]

Hi Andy.

Thanks for your explanation. I am sorry to hear that you are having such a rough time with your HE and other cirrhotic complications (ie needing a TIPS procedure).

As far as schools of thought. That is the nature of forums. Anyone is free to comment and give there opinion whether they have any experience or knowledge on any subject.

If you are interested in getting the actual medical information rather than any one person's opinion about cirrhosis and its complications I would suggest reading the "AASLD Practice Guidelines", which cover all aspects of liver disease which are online and available to everyone.

These are the guidelines written for hepatologists and others involved in the care of those with liver disease, especially those with advanced liver disease and its complications. These guidelines are written by the leading experts in their field. In these papers you can read the latest understanding of the issue and the recommended treatment guidelines.

NOTE: These are just guidelines. Each person's liver disease and how it manifests itself is different and must be managed on a individual basis.
I(I have meet over 500 liver transplant patients over the last 6 years. No two people have the same journey.)
This is where your hepatologist comes in. They know your medical history and current status and will tailor and treatments for you.

http://www.aasld.org/publications/practice-guidelines-0

What I did during the time I waited for my transplant was read all of the AASLD Practice Guidelines and the latest papers from the yearly AASLD and EASL conferences and when it became available, the Hepatitis C Treatment Guidelines.

If I understand you correctly maybe you feel that you have researched too much into certain matters about liver disease and its consequences?
I can understand that. In my personal experience I have come to understand that there are times when a patient with a serious medical condition (like advanced liver disease/liver cancer ) may not want to know certain realities. Unfortunately advanced liver disease can be a life and death issues for some of us and all too many sadly don't survive it.
During my research pretransplant I found out things about my case that in retrospect I wish that I did not know. So now I consciously stay away from certain medical areas (liver cancer post transplant) because I can't change the facts of my situation and it only creates more mental suffering which I rather live without. I figure best to live every day while we can as that is all anyone us has anyway.

You can find the December 2014 update of...
"Hepatic Encephalopathy in Chronic Liver Disease:2014 Practice Guideline by AASLD and EASL"
http://www.aasld.org/sites/default/files/guideline_documents/hepaticencephenhanced.pdf

* Introduction
* Definition of the Disease/Condition
* Diagnosis and Testing
* Treatment
* Alternative Causes of Altered Mental Status
* Follow-up
* Suggestions for Future Research
* References

All the best to you, Andy!
Hang in there.
Happy New Year and good luck with your treatment!
Hector

[andyhawaii123]

Hector,

As always, Thank you for your input.

I've been taking Lactulose for about a year. I take 30ml x 4 daily. While I was in the acute post-surgical rehabilitation facility (for about 5 months) I was given the Lactulose with my other meds, which was usually just about meal time. They used the unflavored type, and I did need the food to keep it down. And I got used to that routine.

When filling the prescription upon release of the rehabilitation facility, I started ordering all my Scripts at CVS. They automatically gave me the mint flavored version, and it was very tolerable. I could pretty much take it on a full or empty stomach. And, yes, I do take it (combined with Xifaxan) for treatment of Hepatic Encephalopathy.

I had the TIPS procedure done do to uncontrolled Portal Hypertension that almost killed me. Unfortunately. one of the major side effects/reactions of the Bypass shunt is raised ammonia levels, and the development of constant HE symptoms (I have to track each of 14 symptoms of HE on a weekly basis and have my ammonia levels checked every month-sometimes even more often).    

A few months ago, I had started taking the drug at least 1/2 hour after meals. I felt with the rev'd up GI track function, I might likely be hampering the absorption of my other meds buy taking it all at the same time as.

Now that I have started taking the Harvoni, the UCSD Pharmacologist specifically instructed me to take the Harvoni at least 1/2 hour before any other meds, or food, in the morning. So now I take the Harvoni, wait a half hour and take my other morning meds with breakfast, then wait another half hour to take the lactulose.

I discussed this with my UCSD Liver Center Hepatologist, and he said to take it after meals and meds, like I'm doing, but it's really not a major issue... in that Lactulose, being a strong Non-soluble Sugar base laxative, really doesn't hamper Nutritional and medication absorption.  

The reason I posted the question isn't because I'm unfamiliar with Lactulose. The problem I have is when I'm doing my research on line there seem to be many schools of thought regarding this issue. Since I usually find good solid input from this forum, I wanted to ask those who take Lactulose what they think, and what there experience and successes have been with the different timing of doses. My personal problem is not a lack of research, but more that I'm looking too far into it.

Again thank you for your usual help and prompt response.

I wish you and yours the best of this New Year.

Andy

[HectorSF]

As with all medications, instructions on how to take your Lactulose or any medication should have been explained by your prescribing doctor when they prescribe it. Of course for someone with HE they can often forget what was said so that can be an added factor. Which is why I took notes of all of my meetings with my hepatologist as I would forget half of what she said an hour later thanks to good ole hepatic encephalopathy!

The lactulose instructions are also listed on the drug label (if you have a magnifying glass!) which is included with the medicine typically in the box. That little paper that most of us throw away when we open the box. Walgreens I know also prints out the basics of the label along with the recipe of your med. The information can also usually be found online. As most drug labels are post online by the manufactures. This also applies to all cirrhosis related meds such as diuretics, beta-blocker as well as hepatitis C medicines for that matter.

The usual Lactulose adult oral dosage is 2 to 3 tablespoonfuls (30 to 45 mL, containing 20 g to 30 g of lactulose) three or four times daily spaced out over the day.

The dosage for each patient and when to take the medicine should be on the bottle label. Typically the dose will be listed and also the number of times a day the med should be taken.  Also the doctor may give you special instructions about taking the drug that may be important for your particular medical condition.

For those people who take Lactulose to manage hepatic encephalopathy due to cirrhosis and portal hypertension, Lactulose is commonly taken after a meal, as some people may feel queasy after drinking it alone.

The purpose of taking lactulose (an indigestible sugar) is to keep the digestive tract moving so that no food stays in the GI tract long enough to create the toxins that cause HE and its symptoms. To accomplish this, the rule of thumb for the proper dosing of Lactulose is to have 2-4 “loose” bowel movements per day. The dose is titrated (changed) until this number of bowel movements are produced. Having more bowel movements or having diarrhea from taking too much Lactulose is counter productive, and can lead to dehydration which actually can trigger an HE episode! Too little Lactulose and a person can become constipated which can also trigger an HE episode. So proper dosing is very important for the maximum benefit. It takes time to get the dosing right but once you do you should feel better. The good thing about Lactulose, beside all of its nastiness - it works! Even for people who have gone into a coma and been hospitalize Lactulose can help them to recover their mental functioning. (But Lactulose enemas are not something I recommend if you can help it)!

As in all cases of advanced liver disease, your doctor is THE expert on your particular liver disease and its complications. You want to make sure your Harvoni has time to be absorbed properly while still managing your HE while on treatment. Personally I would call the doctor (a hepatologist hopefully) for assurance that I wasn't impacting my HCV treatment with the lactulose dose timing.

Good luck with your treatment!
Hector
(I took lactulose for 5+ years before my liver transplant. One benefit of transplant...besides being alive - no more lactulose!