Encephalopathy - Another drug besides Xifaxin Called Neomycin

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KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/6/2010 6:46 AM (GMT -7)   
Thought I would pass this on. This is KathleenW and I do have a couple of other threads on this site, but thought this information should be in its own heading.

Xifaxin is a effective antibiotic for the treatment of Encephalopathy, but it is very expensive ($1,200 a month is not uncommon). Insurance companies are outright denying it or making their members jump through hoops. My mom's Medicare D plan requires a formulary exception and she is with a top notch company. The point is they do not want the drug used for anything but this application as it does have orphan drug status. However, some of the other "for profit" insurance companies may deny it all together.

So what do you do? Talk to your specialist about antibiotics that do not absorb into the blood stream but go into the intestinal track. This is the key. Apparently Neomycin will do the same thing, is really inexpensive and along with lactulose can be very effective. There may be a few others as well. The draw back is it may cause kidney damage in about 1% of the population.

Thought I would share my findings...
Kathleen
Life is painful, suffering is optional


DDMom
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Date Joined Apr 2010
Total Posts : 195
   Posted 6/6/2010 7:42 AM (GMT -7)   
My husband was on Neomycin for years it's a good medication but one of the side effects is hearing loss in some. My husband has lost some of his hearing but no proof it was from the medication but Hep doc took him off of it and put him on the Xifaxin. He is on the trial right now to save money but the trial is about to end and it's suppose to become FDA approved for encephalopathy so it might be covered more by insurance and not so expensive. Xifaxin is approved for travelers diareaha(spellings wrong) but not sure if that makes a difference regarding cost when the perscription is filled for that. I know we hope it becomes approved and the price goes way down.

DDMom

KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/6/2010 8:34 AM (GMT -7)   
Xifaxin is FDA approved - but they gave it "orphan drug" status for Encephalopathy which means no generic can be made or sold for a longer period of time. This is the ONLY way the cost will ever come down. Also, companies typically don't make generics unless there is a large enough market for the drug. As a note, this is less of an "insurance company" issue but rather a pharmaceutical company issue. When we talk about health care reform in this country, pharmaceuticals is one of the areas that needs to be addressed as well. They have the most powerful lobby of all.
Kathleen
Life is painful, suffering is optional


**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 6/6/2010 11:39 AM (GMT -7)   
There are a couple of advantages using xifaxin, over neomycin. I took neomycin for several years, then heard about xifaxin from my Hepatologist. He prescribed it and BC/BS said no. My doc went back to them and said I needed it, because of possible damage to my kidneys. My kidneys were fine, but he thought it would be better for me. I had monthly blood work for kidney function, ammonia level and of course liver panels.

The other thing that's better about xifaxin is that it doesn't have laxative effects of neomycin. I already had constant diarrhea from lactulose as it was. Combined with neomycin, I was having sudden explosive attacks all day long. The xifaxin cut my bathroom visits in half. My pharmacist told me the xifaxin I was taking cost $15 per 200mg. pill. I was taking 2 a day. $15 x 60 = $900 each month. My co pay was $50 for a months worth of the meds. If you are able to find a doctor that's willing to say you need it, really need it, then your insurance should pay. But, you need a doc that will go to bat for you, beyond just writing the prescription. **David**
"No good deed goes unpunished."


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/6/2010 1:50 PM (GMT -7)   
Good point David - BCBS is going to be one of the better plans to get this drug. Typically, you are going to need what is called a formulary exception - depending on your plan. So, for my mom, she can likely get it if the doc will fill out the form - I printed it out, completed all the member information and have it ready to hand off to him... However, at this point mom is so sick, I don't know that we will get a chance to do much out patient....
Kathleen
Life is painful, suffering is optional


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/6/2010 6:15 PM (GMT -7)   
Hi, when my husband was on it we had Pacific Care. They denied him at first too. I called the company myself. I think I threatened them with a lawsuit if my husband was to die or something along those lines. I know I wasn't too nice. If any of his docs called them, they didn't tell me they had. I know that I didn't have to fill out a form though.

Take care.....thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


KathleenW
Regular Member


Date Joined May 2010
Total Posts : 80
   Posted 6/6/2010 7:24 PM (GMT -7)   
Good for you Pink Grandma! I did find out they can get it in the hospital, it is out patient where we'll need the exception. I'll get 'er done, you can count on that!!!!!
Kathleen
Life is painful, suffering is optional


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/6/2010 7:37 PM (GMT -7)   
Hello, I got this beat here, doug never got denied for xifaxin but he did get denied for insulin. The insurance company wanted him to use the synthetic insulin and no matter what Josilin Diebetic Clinic wrote or the Liver Center they said NO NO NO so I had to pay out of pocket for the humilin,,,, both types he had to take insulin 4 times a day...... so insurance are hard to figure. My MRI showed a definate torn rotator cuff ( MRI has only a 5% error for this) and they declined until after cortizone shots(2 at over 200 each) and 2 months of PT at three times a week...duh so the final cost was much more and more damage doneby the time I got approval, go figure!!! Do they want your first born before they get it
I need to stay off this soap box I get long winded
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.


vasquez
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 6/11/2010 6:49 PM (GMT -7)   

The neomycin is cheaper does a great job. Yes, it is hard on your kidneys. Husband took it for couple of years and it really helps him. The insurance at first did not want to help pay for the xifaxin. Then the hep doctor perscibe it again and they paid it. He is on it the xifaxin now and the insurance is paying for it. Neomycin is no longer a good choice because of kidney function. You have to watch the labs. I don't think it was the neomycin in itself; it is the combination with all the medications that work though the kidneys because you have liver problems the doctors tend to find drugs that do the job that does not filler though the liver at a first choice. I do know that when we were called in for liver transplant he was given large amounts of the neomycin and other things too protection him because of the lower ability to fight off infection. We have been called in a couple of times, but no new liver yet. I hope he can stay well enough to make it. Here is a list of the basic drugs and many different vitamins like c, d, b and iron. That husband has to take:

Lactulose, rifaximin /Xifaxan, spironolactone/ Aldactone, furosemide/Lasix, levothyroxine/Synthroid, omeprazole/Prilosec, propranolol/Inderal and Flomax/ tamulosin.

Post Edited By Moderator (hep93) : 6/11/2010 9:35:50 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/11/2010 8:25 PM (GMT -7)   

Vasquez, thank you for the information.  In the interest of accuracy, I have corrected your spellings of the some of the drugs you listed.

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/11/2010 9:33:02 PM (GMT-6)

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