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Hepatic Encephalopathy taking Lactulose

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Posted 5/25/2013 4:30 PM (GMT 0)
Hi, new member here. My mother is the main caregiver to my dad who has stage 4 liver disease. He was recently diagnosed with Hepatic Encephalopathy and is taking Lactulose. When he was first diagnosed he was taking it twice a day but the diarrhea was so bad and uncontrollable he backed off to once a day. He has since gotten worse and is not himself. All the side affects of memory loss, mood swings, gets angry with her and his children/grandchildren, which is not him at all. He also cries all the time. So the doctor but him back on twice a day for the Lactulose. After one day the diarrhea has come. My mom has to clean him up each time as he is not able to clean himself.

I am looking for advise, suggestions or information that might have worked for others. They have canceled all their summer plans because its uncontrollable and he gets so embarrassed.

Thank you for your time and I appreciate any and all help.
Posted 5/25/2013 4:48 PM (GMT 0)
Hi, fivehales, and welcome to the forum. And welcome to the wonderful world of Lactulose. Bowel movements are exactly how Lactulose removes the toxins from the brain that cause HE. It's nasty and a necessary nuisance, if he is to stay in his right mind. I have been fortunate never to have had HE, but from what I've read here, diarrhea is just part of the treatment.

He MUST take the amount of Lactulose prescribed...or become impossible to live with, and could be a danger to himself and others. Diarrhea seems a small price to pay. Tell your mom to get some adult diapers for him, as humiliating as that may be. It will help with accidents, particularly if going out. She also should get some wipes to help with cleaning him up, if she hasn't already.

I hope these suggestions help. Though it may be somewhat slow this weekend, I'm sure others will chime in with their own experiences and suggestions when they are able.

Hugs,
Connie
Posted 5/25/2013 6:08 PM (GMT 0)
Hello Fivehales , I suggest you see about getting him a prescription for Xifaxin . Xifaxin works in combination with Lactulose to clean the toxins out thoroughly . As Hep93 or Connie suggested diarrhea is something he'll have to live with for now but Tucks medicated wipes are great for rawness that results from constant bathroom trips . 

 A. Ziffle 

Posted 5/25/2013 6:42 PM (GMT 0)
The trade off of having a loved one thinking sanely vs diarrhea was worth the trade off for us. But hubby wouldn't wear "Depends" (adult briefs), so we had to just quit going places because of the constant diarrhea. Sorry, but that may just be the way it will be.
Angie1953
Posted 5/25/2013 7:05 PM (GMT 0)
The good news is he's still with us! It is a trade off as Angie said. It helps the mental confusion. Sandia
Posted 5/25/2013 8:08 PM (GMT 0)
As a wise doctor at MGH told me when I asked what to do when he has his daily doses of lactulose/Xifaxin and still shows signs of HE:

Lactulose lactulose lactulose!

When HE is bad enough for an ER visit, the first thing they do is give lactulose, starting once an hour and then tapering off as the ammonia levels come down. Please know that you cannot overdose on lactulose, it is far better to have the inconvenience of incontinence than to allow those high ammonia levels to do their damage. The worst episode my brother had, resulted in kidney damage so be sure he stays hydrated too.
Posted 5/25/2013 8:22 PM (GMT 0)
Dr gave my hubby anti-depressants for awhile and that helped a lot. You indicated your Dad crys all the time, he is probably depressed....which is understandable. Eventually my husband dealt with the fact that he would die of this disease and we stopped the anti depressants, but they were really helpful when he was first diagnosed with end stage and for the year and a half after. My hubby had been talking about hanging himself, so it helped a lot.
Angie1953
Posted 5/25/2013 10:51 PM (GMT 0)
Hi FH, Welcome to the forum.

Just one more loved one of a Hep C, Alcoholic Cirrhosis, HCC patient here.  My partner is 2 years post transplant now but those ESLD days are right in the front of my memory.

Like Ziff says, see if they will prescribe Xifaxan to add to the evil Laxtulose.

Mike was compliant with the Lactulose, but it just didn't do the job. He was cranky and horrible to me every single day. Then he was in the hospital one of the many times and they started him on Xifaxan in there and a normal man came to inhabit Mike's body for the first time in months. We chatted, laughed, etc.

Then when we came home, NO Xifaxan, the insurance said it was too expensive, blah blah blah.

I wrote a horrible letter about what END STAGE LIVER DISEASE was really about....the END. And I wondered if this insurance company was going to deny MORPHINE at the end also....because, after all, my partner was dying also what did they care.   I talked to someone snotty on the phone one day and reminded them they weren't going to have to pay for it for long....he was going to be gone soon.  Well, they wrote the RX, Mike felt much better and he got his transplant...didn't die, and didn't need their dumb medicine much longer after all...4 months worth!

Posted 5/26/2013 1:48 AM (GMT 0)
  tongue   Gotta love a feisty woman ( Carol ) !!!

 Ziff

Posted 5/26/2013 2:06 AM (GMT 0)
Ziff--u r not the first to call me that!

Point is-- the Xifaxan helped. Don't anyone let the pencil pushers chase you away.

And I don't mean to make light of the many who actually do pass. I feel strongly that they should find the transition as gentle as possible. It seems cruel for it to be a horrible stressful or painful time.

Carol
Posted 5/26/2013 3:14 AM (GMT 0)
You have to take enough lactulose until the fog lifts. There were days when I took as many as 5-6 doses. I found every bathroom in town and even behind bushes a few times. I'd rather spend time on the toilet and know what's going on, than befuddled sitting on the couch. Just as others have said, get xifaxin, it helps a great deal.

While you can't overdose on lactulose, diarrhea will dehydrate you, so drink lots of water along with it.

If you have HE severely, and long enough, it may cause permanent brain damage, so that's another good reason to take lactulose.
Posted 5/29/2013 2:39 AM (GMT 0)
Thank you all very much for your help. I appreciate the stories, it helps us not feel so alone. We are taking it one day at a time and will continue the Lactulose and live with the diarrhea. We would rather have his mind back. We will ask the Dr about the xifaxan, thanks for that.

Thanks again
Jeannie

Post Edited By Moderator (hep93) : 5/28/2013 10:25:54 PM (GMT-6)

Posted 5/29/2013 2:43 AM (GMT 0)
FH, Glad you came back to us.

If we can help, ask away. We are here, from all over, awake most of the day....somewhere.

MamaLama
Posted 5/29/2013 3:05 AM (GMT 0)
My tip is to have the depend briefs, huggie wipes and or Tucks, and a change of clothes whenever you leave the house. Actually the wipes are great at home too. Disposable pads for the bed could make the sudden diarrhea episodes much neater. The nurse, I won't say where, actually gave us a whole package of those pads...very helpful.

I have to reiterate how important it is to stay hydrated...always a bottle of water bedside and for the car. You surely don't want to add kidney issues to the mix.

Cleaning up is ever so much easier if you have a removable shower head and a shower chair. Much safer too because the patient is often too weak to stand for the whole shower.

Post Edited By Moderator (hep93) : 5/28/2013 10:26:46 PM (GMT-6)

Posted 5/29/2013 3:18 AM (GMT 0)
Just a welcome, Fivehales,
My husband has HE since the TIPS in January. May I suggest you sell your car if needed, to add the Xifaxan (that was a joke, but seriously, it made a huge diff'). Having said that, themister is not what I would call "mentally with it", but he is at times. And I love those hours, or 15 minutes of time. He hallucinates sometimes. You will hear us repeat...Lactulose...add more if he is not level.

Also, be certain to give him his meds. I found out the hard way my husband was not taking his. I do not know your family and situation financially, however...there are a lot of ways to get some meds or lower costs with coupons from the drug company.

Good luck. HE is awful. It just robs a person of so danged much of who they are.
Hugs to you caregivers for your Dad...and to him, themiz

Post Edited By Moderator (hep93) : 5/28/2013 10:29:20 PM (GMT-6)

Posted 5/29/2013 4:33 AM (GMT 0)
I have had a shower chair since my bilateral hip replacements, as I am a fall risk. In this apt. I moved to nearly 3 yrs. ago, they removed the tub and put in a step-in shower for me...free of charge. I also have 2 grab bars that are bolted into the tile...and a pull-cord next to the shower that I can pull to summon Rescue if "i've fallen and can't get up." Another one is also behind my bed. I've never had to use either, but they've gone off by mistake a couple of times and I found out that they DO respond. These have come in very handy after hip revisions and surgeries, including transplant.

Hugs,
Connie
Posted 6/3/2013 1:52 AM (GMT 0)
Would someone tell me exactly how much they pay for Xifaxan (assuming you buy it at retail price from a pharmacy)? I will probably be having a TIPS this summer and my insurance only pays a small percentage of a drugs cost. I want to know what I am in for. Thanks!

-K
Posted 6/3/2013 2:11 AM (GMT 0)
Kierstin, my understanding is that it costs close to $2000 a mo. I suggest you have your doctor write a letter to the manufacturer saying that you need this med and can't afford it. He also needs to include a prescription for Xifaxan. They will either send a 3-month supply to the doctor's office for you, or send you coupons to use at a pharmacy. Look at info on this at the end of the Hepatitis Resources page.

Hugs,
Connie
Posted 6/3/2013 5:42 AM (GMT 0)
Thanks for the info, 2k a month is too steep. I will order it online from Canada. I just looked and they sell 100 tablets of 400mg for $146. Should have checked there first, sorry for the bother.

The reason I didn't look for the info on prescription help is I don't qualify for needs based assistance. However 24k a year is too much even for the middle class. The online Canadian pharmacy I use is a bit of an extra pain, but for expensive stuff, they are worth it.

Post Edited (Kierstin) : 6/2/2013 11:49:11 PM (GMT-6)

Posted 6/4/2013 3:06 PM (GMT 0)
Hi Kierstin,
Would like info on your pharmacy, if that is possible.
Themister just fell into the Medicare "donut hole" last month. One 90 day RX of Xifaxan put us in, one will nearly, get us out. He needs to be on this to keep at functional. Lactalose alone just does not cut it.

The cost for my husband is about $1,300 per month. His cost was almost $500 per month of the $1,300, his co-pay. We now must pay 100% until we pay the $4,750 (known as the coverage gap). Needless to say, his Social Security Disability is not enough to support his illness. Only $100 more than one month of Xifaxan. I make just enough more to keep us from getting other help. I have been thinking of driving to get his meds across the border. A lot of folks do that in AZ. I have done that years ago when I had a place on the beach in Mexico as a 2nd place...but waiting on RX insurance. I never had a problem with out of US pharmacies, but that was a long time ago.

Hope this helps Kierstin. It sounds like you have a better solution, one that may help many that post here. Hugs to you, themiz

Edit..and another edit ; )After posting above, I realized I did not post the mg. per day and dosage. Not certain what others here take, so I will attempt to break this down so you have an idea for your future use.

The Candadian pharmacies I checked were 200 mg tabs @ a cost of $5.00 USD per tab. Themister is RX'd 550 tabs, one morning, one night. (1100 mg per day). If I cut his dose to 1000 mg,  with his doc's approval, it would be $25 per day with the Canadian pharmacy.  $750 USD per month. I see you had 100 tabs of 400  mg for $146.

Luckily, we have a new doc  (gastro/hepa) appt this afternoon. I will discuss dosage with him and report back. I would love to hear other costs for folks in other countries.  Good luck with the TIPS. Best care, themiz

Post Edited (themiz) : 6/4/2013 11:38:48 AM (GMT-6)

Posted 6/6/2013 12:02 AM (GMT 0)
I just double checked and 100 tabs 400mg ea is indeed $146. Seems much cheaper than you found. I have used this place once before for a very expensive prescription. I was able to save $400 dollars then. Other than a bit of confusion about the ordering process (my fault), everything went well and I had it in a few days. I recomend calling their order number the first time, rather than trying to do it all online like I did.

http://www.canadapharmacy.com/

I appologize if I am not supposed to post commercial web addresses, but she did ask and I really want to help if I can.

-k
Posted 6/6/2013 12:46 AM (GMT 0)
My dad uses the site Kierstin posted for his COPD meds. He has never had an issue, i think he orders 4 times a year
Posted 6/10/2013 12:51 AM (GMT 0)
@Keirstin,
Thanks for this info. Yes, this will help. Thanks for the website. Really helpful info.

@SyXx...glad to have a "2nd" opinion. I know a former plastic surgeon bought his botox supply from Canada...same brand.... and that info shocked me silly.

I am really grateful the donut hole is getting filled in a bit every year. This has been difficult for seniors on expensive RX's. Don't get me wrong...good to have Part D Medicare since 2003 when Granny first got it, but that donut hole was a big ???what??? It still has 7 years to go...little by little. That will be one less thing to worry about.

Be well...the both of you. Again, thanks, themiz
Posted 6/10/2013 1:50 AM (GMT 0)
I am on Medicare and the donut hole gets me.

But before this we both had private insurance, expensive insurance, continued after we retired as self pay, like COBRA.

It cost thousands a year and once they paid $1000 for each of our meds, we were totally on my own the rest of the year.

I am cautious about the "new" programs, worried that they will be the same, that the coverage will be fine for a young person without anything horribly wrong and then the self pay portion will cut in really quickly!
Posted 6/10/2013 3:03 AM (GMT 0)
@Mama...I have private insurance and now I am on Cobra. I don't know if I have the RX cap for me, but my meds are pretty generic and cheap. I am sure they all are a bit diff'. When I first had this insurance 20 years ago, there were zero co-pays, zero deductibles. They started adding them little by little in the early 2000's. I have dental and vision, RX, hospital and doctor. This was as good as one could get....and I felt so lucky to have it.

I also have no idea what the future programs will look like, but hope for the best....and anything to assist sick folks not go bankrupt. Where I now live (and have lived twice before in a previous lifetime ;) ), there are tour bus loads of snowbirds that pay to rent a bus as a group. They go to a little town across the border from Yuma. Algodones. Last time I went there, two pair of RX glasses about $150 USD, RX meds at a huge discount. (Over 55 community, so Premarin was a big seller, and most were on fixed incomes).

And, the dentists were super. One poor woman was on the bus down to get a root canal. She walked back across with an ice pack and paid a fraction of US costs. Went back for the crown a month later. We all lived in the same community, and I never heard one bad result, and it is a pretty fun day with friends.

So I am close enough to possibly use these services.

Hugs, hope you had a nice week-end. themiz
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