Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. Well, if anyone has any ideas for the encephalopathy I would be very grateful. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Hi Donna: My husband took xifaxin for encephalopathy and I know it is expensive. His liver dr wrote a letter to the insurance telling them it was absolutely medically necessary and they approved it. You might try asking the dr to do that. Hope this helps. Jackie Subject: medicine/Xifaxan To: livercirrhosissupport Date: Saturday, January 29, 2011, 6:40 PM  Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. Well, if anyone has any ideas for the encephalopathy I would be very grateful. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2011 Report Share Posted January 30, 2011 Hi. Xifaxin (rifaximin) is expensive but it is the current standard of treatment for hepatic encephalopathy (HE). It is usually taken with lactulose (the old tried and true standard). As you may or may not be aware lactulose treatment has many unpleasant side effects. Gas, bloating, diarrhea, and other nasty problems. Which is one reason for those of us who find that Xifaxin also helps us to manage our HE we prefer it. Unless you have received a letter from your insurance company stating why they won't refill the Xifaxan you should either call them yourself or your doctor contact your insurance company and see what the problem is with you getting more meds. ------------------------------------------------------------ The Liver Meeting 2010: American Association for the Study of Liver Diseases (AASLD) 61st Annual Meeting: Abstracts 19, 24, and 22. Presented October 31, 2010. In March of this year (2010), the US Food and Drug Administration granted a label indication to the antibiotic rifaximin (Xifaxan 550 mg) for the treatment of hepatic encephalopathy. Rifaximin is a potent broad-spectrum antibiotic that has virtually no systemic absorption and is well suited to control intestinal bacterial overgrowth without systemic exposure. Cirrhotic patients are predisposed to intestinal bacterial overgrowth. Deterioration of the gut barrier function can result in the translocation of bacteria and increased abdominal inflammation, which in turn can result in increased portal venous pressure. Other antibiotics may work but there is no clinical data that conclusively shows this. Your husband has decompensated cirrhosis which is a life threatening disease with many debilitating symptoms. That the insurance company will not pay for the meds he needs to live more comfortably is cruel and criminal in my opinion. Please pressure the insurance company to support your husband in his time of need. If you get nowhere after your doctor tries, contact your local Congress person and ask for their assistance. This is why many of us distrust and dislike the so-called " medical insurance " companies. We pay them for decades and the when we need their assistance they try everything that's legal to get out of providing the health services to people in need and who are suffering day to day. It really doesn't seem they provide the " insurance " they are in business to provide. The new health-care " Patient Protection and Affordable Care Act " should give you more leverage as the insurance companies need to spend more money providing health-care services instead of increasing managements salaries and other perks. Best of luck to you and your husband. SF ---------------------------------------------------------------- > > Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? > > Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. > > Well, if anyone has any ideas for the encephalopathy I would be very grateful. > > Donna > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 I was on Xifaxan for encephalopathy, and it did help, but caused me upset stomach, so i discontinued it. My insurance balked at first, they tried to tell me that they would pay for neomycin, instead, but I was warned that it was harder on the liver, that xifaxan was better. The nurse in the transplant floor fought on my behalf, and the insurance eventually paid for it. Worse comes to worse, ask the doctor if they will write a script for neomycin. It's been around forever and it's cheap. Good luck to you, keep fighting!! Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sat, January 29, 2011 4:40:43 PM Subject: medicine/Xifaxan Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. Well, if anyone has any ideas for the encephalopathy I would be very grateful. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 Has anyone taken cholestyramine with their lactulose? My doctor just started me on it because the lactulose does not seem to be working as well as it should. Joan ________________________________ To: livercirrhosissupport Sent: Mon, January 31, 2011 8:41:47 PM Subject: Re: medicine/Xifaxan I was on Xifaxan for encephalopathy, and it did help, but caused me upset stomach, so i discontinued it. My insurance balked at first, they tried to tell me that they would pay for neomycin, instead, but I was warned that it was harder on the liver, that xifaxan was better. The nurse in the transplant floor fought on my behalf, and the insurance eventually paid for it. Worse comes to worse, ask the doctor if they will write a script for neomycin. It's been around forever and it's cheap. Good luck to you, keep fighting!! Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sat, January 29, 2011 4:40:43 PM Subject: medicine/Xifaxan Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. Well, if anyone has any ideas for the encephalopathy I would be very grateful. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2011 Report Share Posted February 1, 2011 When Ardis was alive and staying in the nursing hopme, they had her taking Cholestyramine with her lactulose. This was when I learned that I could have given her the lactulose in juice instead of straight up. I can barely stand it in juice, so I cannot imagine how horrible it was for her to take straight. In the hospital I had to take it straight, and it was bad bad bad. I seem to remember the Cholestyramine did have a warning about kidney function, so I believe it is important to follow any special instructions about how much fliud to drink, etc. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Tue, February 1, 2011 7:50:24 AM Subject: Re: medicine/Xifaxan Has anyone taken cholestyramine with their lactulose? My doctor just started me on it because the lactulose does not seem to be working as well as it should. Joan ________________________________ To: livercirrhosissupport Sent: Mon, January 31, 2011 8:41:47 PM Subject: Re: medicine/Xifaxan I was on Xifaxan for encephalopathy, and it did help, but caused me upset stomach, so i discontinued it. My insurance balked at first, they tried to tell me that they would pay for neomycin, instead, but I was warned that it was harder on the liver, that xifaxan was better. The nurse in the transplant floor fought on my behalf, and the insurance eventually paid for it. Worse comes to worse, ask the doctor if they will write a script for neomycin. It's been around forever and it's cheap. Good luck to you, keep fighting!! Love, Bobby ________________________________ To: livercirrhosissupport Sent: Sat, January 29, 2011 4:40:43 PM Subject: medicine/Xifaxan Hello........was wondering if anyone has used Xifaxan for encephalopathy. My husband has been on it and asked the doctor to call in a refill (he had originally received it at rehab) but the insurance refused the refill due to the high cost of it.....it's $330.00 for 30 pills. If necessary I will try to pay for it myself but was wondering if anyone knew or had been on anything else for the encephalopathy that worked as well. This medicine seemed to help my husband quite a bit. The pharmacist told me that a lot of antibiotics help with it also. Has anyone heard of that? Jackie.....thank you so much for writing back - your story was heartbreaking also but what a wonderful outcome for you and your husband !! I pray that you both now have a wonderful life ahead of you. My husband is not eligible for a transplant, unfortunately. He has been up and down lately.....had the ascites which is now pressing on a small hernia in the groin area......they have put him on 5mg of oxicodene ever four hours. It seemed to help at first but now it doesn't seem to....today he didn't want to get out of bed other than to go to the bathroom. I asked him if he felt depressed and he said absolutely not.......just felt like being in bed today. I hate to push him too much and be a nag.......not sure if I should or not. Well, if anyone has any ideas for the encephalopathy I would be very grateful. Donna Quote Link to comment Share on other sites More sharing options...
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