MDJunction - People Helping People
 

Why wear a ribbon?

 
"Been there, done that 2/14 Inf., 25th Inf Div." (wppr)

MDJunction to me

jenniferdiva"MDJunction has been just an amazing support for me. The people who are on mdj are so nice! Unlike the many other support sites that I have been on. I have made several friends on mdj who are so supportive and so educated about mental illness. Of course non of us are doctors, but we certainly offer each other hugs, opinions, and advice. I have learned a great deal from my friends on mdjunction. I am also encouraging other people who suffer from mental illness to come on to MDJ. It can be a life line." (jenniferdiva)

more testimonials
Cirrhosis Support Group
A community of patients, family members and friends dedicated to dealing with Cirrhosis, together.
Join This Group
Group Home   Forums   Articles   Members (1127)   Diaries   Videos   Leaders   Guidelines
Cirrhosis Group RSS Feed
Cirrhosis ForumsGeneral & SupportStop the Xifaxin?
06/28/2012 07:45 PM
Virginiamom
Posts: 100
Member

I agree. My brother in law is a hospitalist and they help save lives in a hospital setting. However, they are not specialists. My daughter was given much not so good advice and dire predictions when she was hospitalized. I'm no doc but believe the HE meds can't hurt and best to wait until his liver Doc says to cut them back.
Reply

06/28/2012 10:34 PM  Top
artsygirl21
 
Posts: 10
New Member

The only bad thing I can think of with Xifaxin is the bacteria could become resistant to it over a long period of time, but I have seen no studies showing definitive proof of this general theory of antibiotics vs. bacteria. Lactulose does not solve all HE episodes unfortunately, so it would be the best safeguard to have both drugs. The hepatologist should be referred to by the hospitalist, as they are more aware of the liver functions that can occur obviously.

06/29/2012 05:47 AM  Top
ruth8890
ruth8890
 
Posts: 1158
Senior Member

That is so true of antibiotics - I'm a Pharmacy Tech and don't now the answer. You yould think it would cause resistance - gotta check into this one. Surprised the question ahasn't come up before and also that my Docs never mentioned that part. Hmmm...

I explained how expensive the drug is to my Doc (even with a Prior Auth thru my Insurance Co) and my Doc said stop taking it and see how I feel and so far so good! Although I have noticed the walls keep moving (bad walls!Stop doing that) and I'm bumping into them more lately...hmmmm again. However my HE isn't that bad so the future may not hold this option. Thanks for posting this. Ru

Remember this: "HOPE is a good thing. Maybe the best of things" (from the move Shawshank Redemption). There's ALWAYS hope!

My Dad: "Remember, it's always Darkest before the Dawn"

NOTE: for those who don't know, if you click on a member's Moniker it'll shoot you to their profile and you can get to know more about the person behind the unique avatars.

08/20/2012 05:46 AM  Top
maxxdunn
Posts: 36
New Member

I was surprised when I found this site and found out everyone seems to be on Xifaxin and or Lactalose.

I remember the care my mother in law received just 2 years ago and what my wife is going through now. Both had Doctors that were/are reluctant to proscribe Xifaxin and Lactalose for fear of them becoming ineffective over time. Seems they want to keep those tools for future use.

I guess medicine treatments do differ in different areas.

The reluctance to use Lactalose was explained by discounting many studies as not really valid and the ones they do accept only involved patients that were hospitalized for HE several times in the last 6 months or so and my family members never reached that level.

Just a side note, both are/were treated at the same research hospital/medical school which I assume has a tiny bit more freedom from medical ethics and can vary treatments from the standard "if A happens then do B" thing.

Post edited by: maxxdunn, at: 08/20/2012 06:00 AM


08/20/2012 06:00 AM  Top
ruth8890
ruth8890
 
Posts: 1158
Senior Member

Hi maxxdunn - I think Mike or Dennis posted the reason we don't become resistant to Xifaxan. You might try putting in Xifaxin in the search box or PM'ing them. Ru
Remember this: "HOPE is a good thing. Maybe the best of things" (from the move Shawshank Redemption). There's ALWAYS hope!

My Dad: "Remember, it's always Darkest before the Dawn"

NOTE: for those who don't know, if you click on a member's Moniker it'll shoot you to their profile and you can get to know more about the person behind the unique avatars.

08/20/2012 06:15 AM  Top
dmanflan
dmanflan
 
Posts: 1516
Group Leader
I'm an Advocate

Hey maxxdunn!

I have been unable to find any studies that have shown that the body builds a resistance to either rifaximin (Xifaxan) or lactulose. I personally know several people who have been on both medicines for long periods of time with no decrease in the effects. Yes, rifaximin is an antibiotic, but it is "nonabsorbable" that only works in the gut to help kill bacteria to reduce toxin levels. Lactulose causes bacteria in the gut to use lactulose as an energy source rather than protein, therefore making less ammonia. Lactulose also stimulates the gut to work harder, causing diarrhea, which helps to eliminate other toxic substances.

I'm unclear why your family doctors have been reluctant to prescribe these drugs. It may be necessary to push for these drugs to be prescribed if your wife or mother-in-law have been experiencing bouts of hepatic encephalopathy (HE). Also, what kind of doctor is being consulted? It may be time for a hepatologist if they are not seeing one or perhaps even a change in doctors.

Dennis

I am NOT a doctor or lawyer! The information that I share is from my own experiences and is to be considered as hearsay advice only.

"Outside of a dog, a book is man's best friend. Inside of a dog it's too dark to read." -Groucho Marx

Check out our website http://MySickLiver.weebly.com for lots of liver information.
(copy and paste to a new browser window)

Previous discussions I participated in:
Newbie here
New to Forum
non-alcoholic cirrhosis

08/20/2012 07:55 AM  Top
maxxdunn
Posts: 36
New Member

I am absolutely no expert, just listening to a Hepatologist that teaches at a medical school. I have looked at some available studies and neither medicine has extensively been studied for long term use (over 6 months). I am open minded, but we have chosen a medical syndicate that apparently uses these medicines in a more conservative way.

08/21/2012 12:13 AM  Top
mpmom
mpmom
 
Posts: 3275
Group Leader
I'm an Advocate

I am certainly not a Dr. But I am a Licensed Med Tech and a Patients Advocate. I work with patients that have used Lactulose and /or Xifaxan for years with out it becoming ineffective. As a patient that has used Lactulose for 5 years to help prevent flairs and increasing the does(When needed) I know it works for me.

However there are many causes of HE and if your wife is having problems they may be unrelated to the toxin build up that these meds treat Such as infections, Gi Bleeds, Certain meds , Alcohol use and others that would make other treatments more effective.

I agree there are not enough studies especially for long term use, I think it's mostly because there are so few other options for some. Lactulose has been used for 40 years But Xifaxan has only been approved by the FDA since March of 2010 for use in HE.

If the cause is a build up of ammonia they certainly help, Usually the Antibiotics are more effective is almost every study I have seen. However All of the antibiotics carry a higher risk of eventual kidney damage (Xifaxan carries the lowest risk because it is nonabsorble) So Drs prefer lactulose.

There are other treatments

L-ornithine L-aspartate (LOLA); Not available in the US

Zinc sulfate and zinc acetate The studies are 50/50 on this one

Sodium benzoate, sodium phenylbutyrate, sodium phenylacetate (limited by the risk of salt overload)

L-carnitine (only small studies done)

These are usually only used when nothing else has worked or in cases of very severe cases.

Medical science just doesn't have all the answers yet. But if something is working for any patient I wouldn't stop using it.

Gail
Good friends are like angels.
You don't have to see them to know they are there.

08/21/2012 06:24 AM  Top
booky1961
booky1961Posts: 592
Member

Lactulose is our Friend! We call Lactulose "Magic Juice"! I don't know anything about long term use or anything bad about it. What I CAN say about it - It Saved My Husbands Life! Twice!!!

BTW my husband was discovered to have Hemochromotosis when he was in the hospital in March, he's 51. The doctor and the net said it's usually not discovered until a person is in or close to their 50's, women sometimes later. But once you find out, let your family know since it's genetic.

Blessings to All!

Post edited by: booky1961, at: 08/21/2012 06:24 AM

Happy Thoughts!

Booky

08/21/2012 08:20 AM  Top
krishemp
 
Posts: 200
Member

My mom has been on lactulose over 12 years now and we just added the xifaxin/rifaximin this year. It has been a life saver for the HE, if you look on my profile, I posted the signature test showing with and without the rifaximin and the difference is telling for sure. From incomprehensible marks, squiggles, numbers to a proper signature.
~You can count the seeds in an apple, but not the apples in a seed. Unknown~
Reply

Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 3 Next > End >>

CirrhosisCirrhosis ForumsGeneral & SupportStop the Xifaxin?

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved