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Lactulose verses Xifaxan

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Posted 9/18/2010 4:34 PM (GMT 0)
I briefly took 2 Tablespoons of enulose a day when I was first diagnosed with encephalothopy in 2008.  My ammonia levell was 400.  I hated it because at the time I thought I could continue working.  My hepatololgist switched me to 1200 mg. of xifaxan as I was on my husband's insurance and had only $60 copay.  My encephalothopyy has worsened,and I am now disabled, even on xifaxin I experience hand tremors, forget words, and more recently have become confused about what day it is and have fallen twice.  As of September 1st, I am on medicare part d and the xifaxan will cost me $1500 monthly duriing the gap whereas enulose or lactulose would cost $20.  I am seriously thinking about  talking to the Doctor's nurse about  going back on enulose.  With all the diuretics I take, the side effect of enulose can't be much worse. Also, I don't get help paying for my drugs and would like to conserve some money for post transplant drugs.  But I have no idea how low I will have to wait for transplant, my meld is only 14.

At tht end of the month I  have an mri and upper endoscopy scheduled.  They are again considering do a TIPS.

Susie

Posted 9/18/2010 5:52 PM (GMT 0)

 Susie,

I understand where you are coming from Susie about the Xifaxan.  My husband is in the donut hole as well.  We have checked out all kinds of programs to help with the cost and got no where.  They all said the same thing....you have medicare part d and we cannot help.  My husband take the 550mg twice a day of the Xifaxan and 1 packet of Kristalose daily.  He cannot go with out it and still has episodes while on this medication.  Medicare is changing supposedly next year and we are only going to pay 1/2 of the price of the prescription while in the donut hole but that still over priced.  Something is wrong with the system.  You work hard most of your life and pay and when you need the help you pay some more.  We don't qualify for help either and my insurance doesn't cover him confused But what can you do?

DDMom

Posted 9/18/2010 7:03 PM (GMT 0)
Susie, my understanding is that the two drugs are normally taken together. I've never heard of someone just taking Xifaxan alone. However, given the expense, if I were you I'd probably go back on the Enulose.

Hugs,
Connie
Posted 9/18/2010 8:24 PM (GMT 0)
Susie, I had only also thought that the drugs were normally taken together. My husband has taken Lactulose for awhile now and for the most part it does the trick. He is prescribed 3 tablespoons every six hours to produce 3-4 bowel movements a day. There are times that you have to adjust the dose so that is works effectivel;y. Sometimes my husband has to take a little more than prescribed and sometimes a little less. The key is to keep an eye on the number of bowels movements (not constipated, but not diarrea either). You'll be able to figure out what works for you after awhile. He doesn't mind taking it but says that it tastes really bad.

I agree with DDMom. There is something wrong with the system when people can't get the care that they need.
Posted 9/18/2010 9:23 PM (GMT 0)
My husband for a while was taking the xifaxin only due to the fact that the lactulose worked against the seizure medication he was on at the time. However, now he is on the lactulose only, due to the cost of the xifaxin and they have changed his seizure medication and therefore the "medical necessity" for the more expensive drug is not there.

I will ditto what Butterflythree has said. You will have to adjust the dose of the medication to find an even balance.

Hope all works out, I know it's a mess!

Mer
Posted 9/19/2010 12:18 AM (GMT 0)
I changed hepatologists when I was admitted into the Northwestern Hospital  transplant program.  My former hepatologist only sees patients in Indiana and downwtown Chicago.  The new hepatologist sees patients dowtown Chicago and in the western suburbs, Oakbrook near where I live.  I only drive to the pharmacy, drycleaner, and vet which are within 2 miles of my house.  My husband drives me to the heptologist appointments.  The new hepatologist preferred that I go on Xifaxan.

My parents will be visiting me and will drive me down to Northwestern for the mri and endoscopy.  My husband still works and it is hard for him to get time to drive me downtown.  We had to start paying for our health insurance last Spring.  It was cheaper for me to go on Medicare than stay on his work insurance, except for the drugs.

Susie

Posted 9/19/2010 1:21 AM (GMT 0)
The TIPS procedure gave Mike 3 1/2 years of a better quality of life... how frustrating Susie...sorry to hear about your struggle...  makes me really ticked off at this health care system of ours... Sandi
Posted 9/19/2010 4:30 AM (GMT 0)
From what I was told, xifaxin is only an adjunct to lactulose or enulose. I was taking 30 cc. twice a day and would have been happy if there were only 3-4 bowel movements a day. My experience was 3-4 movements within a couple of hours of the am dose and at least 2-3 more through the pm hours. And mine were diarrhea. Nothing near solid for the 5 years I took lactulose. On the good side, it helped immensely to combat encephalopathy.
Posted 9/19/2010 4:36 AM (GMT 0)

Hi susie,  Do you get infections frequently?   Xifaxan is an antibiotic.   My husband had taken lactolose/enulose for months alone before they added Xifaxan to it, after  he acquired MSRA.     The way it was explained to me was that lactolose will not work on the encephalopathy that is caused by an  infection........while the Xifaxan will not work on encephalopathy which is not caused by an infection.  So it makes sense that they are usually ordered together.  Especially once a patient acquires MSRA or experiences frequent infections.

Here's a site that may give you some savings on drugs:

http://www.internetdrugcoupons.com/

Hope this helps..........Thoughts and prayers........

Posted 9/19/2010 5:34 AM (GMT 0)
What is the TIPS procedure? Im not familiar with that term
Posted 9/19/2010 1:31 PM (GMT 0)
TIPS is a procedure that redirects blood flow through the liver. If you look at the post called Hepatitis Rescources you will see a detailed decription. The post also has a lot of other helpful information.
Posted 9/19/2010 3:00 PM (GMT 0)
Pink Grandma,

I am prone to UTI 's.  I take50 mg daily nitrofurantoin macro as a preventative.  The last time I had kidney stones in 2009, I landed in intensive care unit with a Klebsiella infection which is one of those vre infections.

Susie

Posted 9/19/2010 4:48 PM (GMT 0)
 My husband was on Xifaxan as a maintenance antibiotic also.......to keep from getting infections.  But if you don't have an infection you need lactulose also, to rid your body of excess ammonia.  Once my husband  was on both......he had no more problems with encephalopathy.   I would difinitely talk to your doctor about it.  

thoughts and prayers.......

 

Posted 9/19/2010 7:33 PM (GMT 0)
TIPS = Transjugular Intrahepatic Portosystemic Shunt

Posted 9/21/2010 1:46 AM (GMT 0)
Susie, Cranberry Juice 4oz a day helps with UTI issues, fragrance free laundry soap and no deodorant soaps! Oh and no bubble baths or hot tubs! UTI and liver problems are a bad mix for the encephalopathic episodes. Pre transplant you can add acidolpholis to your meds intake you only need one a day, post transplant you cant take it with anti rejection meds. It is found in all drug stores and wal mart in the herbal addatives section. Doug took it for years and the hospital had it in their pharmacy so he got it there also.
Sue
Posted 9/21/2010 2:33 AM (GMT 0)
No bath salts, either. You can get the cranberry in pill form, too.

Hugs,
Connie
Posted 9/21/2010 3:28 AM (GMT 0)
The title, Lactulose versus Xifaxin isn't really the proper way to look at this. Xifaxin may be used to prevent infections, but it works to knock down bacteria in the intestinal tract, helping lactulose do its job of ridding the body of excess ammonia. I was given xifaxin to take the place of another antibiotic that has been around for decades, doesn't work as well, makes one more prone to diarrhea and sometimes is bad for kidneys. Generally, Cipro is the drug used for infections. At least that's what my hepatologist, PCP and the folks at the transplant clinic told me. I can't remember the original antibiotic, since it's been 3 years since then. It's very easy to get, unlike xifaxin. Insurance carriers don't mind paying for it, as it's much cheaper.
Posted 9/21/2010 4:04 AM (GMT 0)
For bladder infections, a sulfa drug is needed--which Cipro is. There is also macrodantin, which can be prescribed in low doses to prevent bladder infections.
Posted 9/21/2010 3:51 PM (GMT 0)
I am allergic to bactrim which is a sulfa drug ; I get a slight rash. So my doctors don't like to put me on sulfa drugs.  I do take a cranberry supplement.

My hepatolologist put me on xifaxan for the hepatic encephalothopy in 2008. For the past year, my symptoms seem to be getting worse.  I have a call into the pre-transplant nurse about switching back to enulose.  I only took it a couple of months before the doctor put me on on xifaxan.   I did not have severe side effects  from it.

Susie 

Posted 9/21/2010 8:21 PM (GMT 0)

 Let us know what pre-transplant does for you.

Hugs,

Connie


Posted 9/21/2010 9:46 PM (GMT 0)
I would like to add that yes, xifaxin alone does help with encephalopathy issues. My husband had to take the xifaxin alone for a period of time. However, due to the cost of the medication, insurance, and most especially medicaid, does not like to pay for it unless it is absolutely medically necessary. He was having to take the xifaxin in lieu of lactulose due to an issue with his seizure medication. He is now on a different seizure medication and the lactulose does not counter react with that medication, so now he is no longer on the xifaxin and back to the the lactulose only

Hope that clarifies any questions

Mer

Posted 9/22/2010 12:07 AM (GMT 0)
I'll echo what Mer said. My hepatologist prescribed xifaxin to help with encephalopathy. My principal med was lactulose, but when my ammonia level got too high, they put me on another intestinal antibiotic, until I finally was allowed to get xifaxin. Xifaxin is often taken by people traveling to countries where food and water are questionable. The xifaxin kills bacteria (germs) in the intestine and helps prevent tourista.
Posted 9/22/2010 12:21 AM (GMT 0)

Thanks Mer and David.  I've edited my own post.  cool

Hugs,

Connie

Posted 11/26/2014 4:00 AM (GMT 0)
im on xifaxin 550 twice a day,,,plus diuretics...i found walgreens,,,,im using am online discount card ,,its like goodrx,,,,but a different name.....20 xifaxins runs me 18 bux,,,or about 54 a month,,im going to ask doc about rifaximin,,,looks like might be better for my unclear memory
Posted 11/26/2014 7:08 AM (GMT 0)
What is the name of the online discount card?
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