lactulose/xifaxan

Greetings Board!

Several years ago when I first had a bit of encephalopathy, I was told by my hepatologist that there was no sense taking Xifaxan alone without lactulose.

At the time, I refused to take lactulose because of the side effects, so I pestered my MD until he gave me a script for Xifaxan, saying that I could take it, but there was no evidence that it worked for encephalopathy without lactulose.

Now, my physicians all say that Xifaxan alone has always been an option as opposed to lactulose to combat encephalopathy.

IMO, my current physicians are simply wrong in their memory that Xifaxan was prescribed alone without lactulose. But they insist my memory is incorrect.

I'm not going to get in an argument over such a thing, but frankly, they are wrong. And I don't like it when my physicians insist something that is not true. Makes me wonder what else they are incorrect about.

I looked back at posts here, and around 2010, it is clearly stated by posters that their MD's said Xifaxan only works in combination with lactulose for the treatment of encephalopathy.

Am I missing something here? I know I am right, but if I am incorrect, I want to know. But I am not incorrect.

Susan

Post Edited (schimbare) : 10/14/2014 3:41:08 PM (GMT-6)

Well, I don't KNOW the RIGHT answer to this. But I can guess.

The insurance companies.

They like you to take cheap generic stuff so that they can make money.

And patients don't like to/can't pay lots of money, so they actually like cheaper costs to them.

So, FIRST try lactulose.

And if that isn't enough, add Xifaxan....if if if...

1. You are rich and can buy stuff that is over $1000 a month.
2. You have great insurance with cheapo copays and your employer pays a lot of $$$ for your policy.
3. You are very very sick and your doc can get an over ride to your insurance denial so that you can afford the good stuff.

And then if everyone isn't making enough money yet, they can prescribe another antibiotic that works pretty well...one of the posters told us about it. Who? A Canadian I think?

None of the top three reasons encourage a doc to prescribe the Xifaxan first.

Mike was desperate before #3 was approved...while he was in the hospital...a horrible mean monster was replaced by a really sick man who was very thankful someone was looking after him. Thank you to the Higher Powers.

The real answer to this will remain a riddle, unless someone actually KNOWS.

Hugs,

Mama Lama

Read this article by Salix. Interesting that it may increase HE and even ascites in some patients. First time I've heard this.

www.xifaxan550.com/

Ziff and Mama,

Recently, I was very clear with the transplant physicians- hepatologists, etc at Mount Sinai, that I had been specifically told repeatedly that Xifaxan alone was not effective without lactulose. And I named names as to who told me that.

They insisted, repeatedly, that it was always the case that Xifaxan alone was always an effective option for those with HE. They were polite enough not to come out and say I was misremembering what I was told, but they just told me that it had always been the case that Xifaxan alone was effective and commonly used by itself for HE.

This pisses me off to no end. I need to have complete and total truth with the physicians. I don't want things sugar coated, nor do I want to be told half truths. I'll take anecdotal evidence - I chose my physicians because of their wealth of experience and interest in moving the science forward while saving lives. Just tell me if the information is anecdotal or completely researched based.

Thanks for your replies. I will ask my current physicians for the cites of the research comparing a single drug or double drug regimen.

Susan

Miz, I personally just do whats needed. I feel woozy, I take Lactulose. I take Xifaxan but at half the dosage I'm required by my docs. I got so used to juggling dosages in the first few years at doctors request. Now I just kinda wing it. Hey it works for me. Bump this up and decrease that till I find a happy medium. I'm just glad I'm alive, The sanity can be optional at this point. Sanity is highly overrated.

Susan, If you can afford it just half a 550mg xifaxin and load up on Lactulose. You know how it goes...... Do what you must. It's hardly worth pissing off a few of your doctors by arguing about it. You been doing the right things for awhile and I suspect you'll continue to do just fine. Adapt and follow your instincts.

Hi Deb, just a question if you don't mind. I have HE currently mostly controlled by xifaxan and lactulose. I am also in therapy with the "not focusing in, loss of time, and intermittent paranoia.."therapist calls this dissociation. Has anyone mentioned this to you? I question now if this is HE or not for me. Something I will check out. Thankful you mentioned side note..xifaxan alone doesn't control he for me.
music 👱.

My doc still does the finger flap test but otherwise nothing else. Labs are always done on each visit. Deb nailed my sentiments exactly.

Oh, themiz, I am so sorry to hear that themister's HE may be acting up. And it would be sad to cancel your plans, but I certainly know what you mean about no bringing him to a situation where he would be uncomfortable.

As I read the articles above in the resources and on various Internet sites, I see that HE isn't just ammonia, that it is a combination of chemicals that cause changes in cognition, consiousness, etc. And digestion seems to be a huge trigger. I noticed that Mike's HE was worse after his very occasional splurge eating BEEF. The man loves his steaks and we did splurge from time to time. And then...Also, it seems like season changes were difficult for him, especially FALL....

As a matter of fact I am suspecting something is cooking with him right now also. He spent most of Sunday in a variety of acting out episodes, mostly where I was the brunt of shouting attacks...my sins were: I changed the FB password when I couldn't get into my account, and the every popular, I had a paper jam in the printer and couldn't get the paper out and asked for help. He was about turned inside out screaming at me, and promised to lock up my compututer so only he could log on. This is not Mike. Normal Mike. IT IS HE Mike. And I told him he could not talk to me that way and would he please just stop talking, period, and take a minute to calm down. Later in the day he said he was sorry "I was so grouchy." What? Then the last 2 days his leg cramps are back, really really bad ones...he was up crying in the night last night....I could feel it....from his knee all the way to his right hip, hard as a rock.

Both of those things are LIVER related.

He has had no labs in almost 3 months because we are in an insurance snafu. In November he is eligible for Medicare and then we can start going to the doctor again. In August they sent us home from TP clinic because they could not get a referral from a PCP/HMO for his visit. And now 2 months later the PCP cant figure out how to get the referral organized out of network for the October appointments with TP surgery (hernia) and Hepatology (post treatment). Our governor changed Medicaid and you had to join an HMO August 1st and none of the ones in our county are the same as the ones in the TP center county and no one will coordinate his care....so he is self pay or wait. We have not had a Zortress level taken in 3 months, so who knows what his antirjection meds are up to. Maybe that is the problem.

We are waiting. But these obvious liver symptoms are troubling.

We have no lactulose at home...all tossed out at TP, hoping never to need it again. But Mike was Level 3 fibrosis 5 months before Hep C treatment, so who knows where his nice new liver is at this point.

There is no arguing with a person with HE. I don't think he knew (or knows) he was (or is) not himself.

If this were me, I would sit him down at a quiet moment, hold both his hands and tell it like it is....that when the HE starts it is tricky and we need to do an experiment and increase the lactulose for the short term just to be sure nothing is "cooking." Would that work? I wish I had a jug of it right now to try such an experiment here.

Do they check the TIPS to be sure it is working okay?

Hoping this clears up soon.

Hugs,

Mama Lama

Thanks Ziff...I understand the cost and needing to look for solutions. I know the financial burden of this medication.

Happy to report the HE lifted and things got moving this morning. A couple of rough days for him, but really...he does not notice it internally as much as I do... looking in. He did tell me when it was starting up. He said he felt emotionally dead, and he was not having bathroom luck, so to watch him the next day. He is terrified of winding up where he was the year following TIPS. Funny, he kind of forgot all of that conversation when HE increased. At least I was warned, AND he noticed it was happening! Good.

His labs were nearly the same today, bili a bit better...stable...stable...stable. The HE this afternoon/evening seems to be very mild. (He is fixing his computer, which he can not even use when compromised.)

So we plan to keep the lactulose at a healthy dose, and I am willing to head out for our event next week. Wish us luck!! Everything is a big deal for me now days. Fear, probably.
Hugs

Mama.... I have to say I haven't noticed beef changing him any more than anything else he eats. His diet has been the same for two years. Trust me, I have watched. Big meals make glazy eyes for a short time, but as soon as he digests a bit, or takes a nap, back to normal. This one caught me off guard.

We eat very little beef, really. Perhaps a roast or steak we split two or three times per month. Last beef was a week ago when I cooked a roast. HE was about 3 days later. Small portions of beef does not seem to change the HE for him. I am going to watch this now though, and much more closely.

"My" gut feeling is that wipe out from the Clindamiacin that happened a few weeks ago, Gut's messy and still normalizing from massive anti-biotic overload for oral surgery. I probably am wrong, but who knows? Perhaps the roast on the wiped out guts...lol. I feel better with labs done, HE much, much eased up, and all of you here to help me.

Susan, we kind of hi-jacked your lactulose/Xifaxan thread. Hope some useful info is found in all of those experienced ones posting about these two meds for HE. Thanks everyone! Big Hugs

ML I am so sorry to hear about Mike's symptoms. It's mind boggling all the hurdles you've crossed and then this. Absolutely ridiculous how those Medicaid changes affect Mike's situation. I hope November is soon enough to get to the bottom of it! Thank goodness for you ... your patience and experience. You are both in my thoughts and prayers.

themiz ... so glad it calmed down. I've had ammonia numbers like that ... where at 65 it was BAADD and 90 was ok. I swear there is a point when HE calms down for me that is pure peace. When I feel that, I know I can rest in it.

I rarely eat meat because I don't enjoy it ... perhaps that's an advantage, except I get the HE anyway.

Susan ... I can't tell you how many times doctors have led me astray by mis-speaking. Or contradicting themselves repeatedly. Or they question in such a way as to make me think I was bat crap crazy (excuse my language). Now I ignore it and hope for a better appointment the next time - because as you know, they never make mistakes. ;)

Here's some irony ... I agreed to participate in a study by the hep clinic to help them determine when driving becomes an issue for those with HE. Since it wouldn't affect my own driving record I agreed (i.e. it didn't go in my file and they couldn't pull my license after the test). When the researcher called to set it up she said there'd be a written report and then a driving test by a professional in that field. I wanted to know the route. They chose a route I would never take on a good or a bad day, right through downtown. I tried to explain but she indicated the tester had been at this for many years and knew best. EXCUSE ME? I have any number of tests I do on a regular basis to determine whether I'm safe to drive. I avoid heavy congestion or rush hour ... I travel back routes ... I go at odd times and I always always have lactulose in the car if I need it. Someone who has no knowledge of HE is supposed to test me with NO FORETHOUGHT as to how someone like me copes???? I declined to participate. It's like I tell my family and friends ... give me a little credit for having learned something along the way and remember how well I actually do cope on a regular basis. !!!

OK I know I've hijacked this thread beyond recognition but I didn't know where else to write. Hope everyone is doing better right now!!! Love and hugs.