Reg Rifaximin (Xifaxan)

[Arlie]

Has anyone ever been on this medication called 1 pill Rifaximin (Xifaxan) 550 mg daily

[butterflyEi]

Hi Arlie

I see no one with experience has been able to help you on this one. Can you give more information? Is it being prescribed for you for hepatic encephalopathy?

best wishes

[Arlie in reply to butterflyEi]

They feel it’s a goid medication to keep issues in control , no I don’t have hep . encephalopathy but I had a little confusion from the elevated ammonia level , very slightly, so i figured the gastro group that worked with the hosp suggested this med , i’m waiting to get an opinion from my Dr. I was curious to see if anyone ever took this , I do thank you for your response, I was diagnosed around 1986-87 , it’s been a long time , i’m just having some ups & downs with blood levels , my first (1) varices banding . I’m going to NY PRESBYTERIAN for a second opinion as to what’s going on , thank you again

[Shulsey]

Hello, it has been awhile since I've posted but I have been on XIFAXAN for a long while now. I suffer with what is called Encephalopathy. This is due to my liver not being able to filter the ammonia like it should. This can cause the neurons in the brain to become gunky or slows them down. This medication helps to break down the ammonia. It took a while for my insurance to cover it because it is very costly. Before the medication Id have what we here in the pbc world, call brain fog. Trouble remembering things or just getting confused easily. I'd completely forget what was being discussed in the middle of a conversation & would stumble over my words. It really sucked to be honest. It still happens, mainly when I'm really super exhausted. I hope I've been a little help for you.

Stay Strong❣️

Shannon

Southern Indiana

Stage 4 PBC, with all the bells & whistles

[Arlie in reply to Shulsey]

I was on lactulose so i was wondering was anyone on that drug, what do your ammonia levels go to

[Shulsey in reply to Arlie]

Im not real sure on how high my ammonia level was. All I remember was how much I hurt, deep into my bones. It has been a long while since my heptologist placed me on it. Yes, I tried the lactulose, but I all also suffer from ulcerative colitis which makes me have more frequent bowel movements so my specialist decided I didn't need the lactulose & placed me on the Xifaxan. This seems to be the best way to pass the ammonia, for me. He also said that we shouldn't take in too much protein because protein breaks down into ammonia. Sounds crazy about how we should watch how much protein we take in.

[Arlie in reply to Shulsey]

Thanks for the info, I was just wondering about that drug

[Shulsey in reply to Arlie]

You're welcome

[gwillistexas in reply to Shulsey]

Shulsey...I was told to drink protein drinks/shakes by my GI. I had my first hepatologist appt last Friday& he said I need more protein. I questioned it because of what I’ve read. He said I don’t need to worry about amonia because my liver is functioning normally. So I will carry on. Hope you are doing okay. Good to hear from you🦋

[VeeWat in reply to gwillistexas]

How much protein did he say to get per day!

[gwillistexas in reply to VeeWat]

Hello! I honestly don’t remember. He said eat anything I want & drink protein drinks/shakes.

[gwillistexas in reply to Shulsey]

Shulsey...if I remember correctly , your grand baby will be here in February? So exciting 😊

[Shulsey in reply to gwillistexas]

Yes, you are correct. My daughter will be going in on Feb 4th because baby girl is breach. She'll be right at 39 weeks so usually flipping the baby will knock her into labor if not they're going to induce her. So, baby Hadley will be here sooner than we expected. I cannot wait to see her beautiful little face & squeeze & hold her. I wasn't this excited about having my girls. I honestly never knew one could love another more than a grandbaby. I thought it would be about the same as having my own. Oh how wrong I was.

[gwillistexas in reply to Shulsey]

Shulsey...that’s wonderful! Nothing more precious than babies. She will lift your spirits & bless you for many years with her sweetness. With you having been not well, she will be the little ray of light you need in your heart 💞. Best wishes to you & your family 😊🦋

[Arlie in reply to Shulsey]

I’m so happy for you and everyone, my sons birthday is tomorrow , 43 and my daughter will be 54 and has 5 yr old triplets , lol

[Hidden in reply to Shulsey]

wishing today for a safe and joyful delivery and waiting patiently to hear news of Hadley's arrival. She's blessed to have such a lovely person for her grand mother. Best wishes

[Shulsey in reply to Hidden]

Thank you so very much. Hadley actually chose to arrive a few days early. She was born on the 2nd at 10:23 p.m. 7 pounds 2oz, 19" long. She's just perfect 😍😍😍

I'll try to upload a pic soon. Haven't been home much & the lovely fatigue has been kicking my butt. Thank you for all of the well wishes!!!

[gwillistexas in reply to Shulsey]

Congratulations!👶🍼💝

[Hidden in reply to Shulsey]

wonderful! that's just so uplifting. Best wishes for all that you wish for yourself and your family xx

[Arlie in reply to Shulsey]

Congratulations on your precious little Angel , God Bless Hadley , 🎀💗🎀

[Arlie in reply to Shulsey]

Hi Shulsey are you still taking Eifaxan

[Arlie in reply to Shulsey]

Also any side effects

[Shulsey in reply to Arlie]

Yes & no side effects for me with it.

[Arlie in reply to Shulsey]

Shulsey , were you having a problem with your ammonia level , also do you take lactulose with it

[Arlie in reply to Arlie]

Him much do you take and how long are you taking this , why did the dr put you on this

[Shulsey in reply to Arlie]

I take 550MG twice daily & I will most likely have to take this for the rest of my life. Unless there is a cure for PBC around the corner. 😔.

I apologize for not getting right back with you. I've been in a slump lately

[Shulsey in reply to Arlie]

Yes, my ammonia level was high. Plus I was having issues with concentration, forgetfulness, & I would completely forget what I was saying as I was saying it. It was really bad when I'd get exhausted. I felt like a idiot when it would happen in groups of people. This is what happens when the neurons of the brain get sludgy. They wanted to put me on the lactulose but I also suffer from ulcerative colitis (UC). Which causes me to have multiple bm's before noon.

[Arlie in reply to Shulsey]

Thanks do you also take lactulose

[Shulsey in reply to Arlie]

No, my insurance didn't want to pay for the Xifaxan at first, so they tried to tell me to take the lactulose. But since I have UC & I take meds for that, the Xifaxan is the better alternative for my treatment