I've noticed I'm getting quite angry and snappy at little things, along with my confusion/forgetfulness getting worse. Does anyone else have a physical fuzzy/numb feeling in your head with HE? Funny thing is I used to be a massive sufferer of headaches daily before this started... Not a single headache in last 2 months with all these symptoms
I'm not an angry person but I've noticed last few days I've become quite nasty at times.
If my bilirubin is normal would you say my liver is just about managing at the moment? No swelling either
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ktan49
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Taking lactulose 3 times a day at the moment .. waiting for appointment with consultant then I'll get rifaxamin.. gp won't prescribe it.. She didn't even know what rifaxamin is..
You can up your own dose of lactose until you get the rifaximin ... No matter how much lactose you take it won't cause you any harm I know it's awful but it is good for h.e .. that's what my consultant told me and I suffered with it bad and I was on rifaximin as well x
Thanks jojo, yeah it's nasty.. really spacing me out now. Gonna ring my consultants secretary tomorrow see if he can sort me a prescription for rifaxamin out.
Ditto - I maxed out on lactulose and rifaximin didnt seem to do anything wrt HE - for me. In the end they gave me loads of liquid enemas to self administer. Oh joy, oh rapture, oh poo poo!
I didn't consider discontinuing taking lactulose- had such horrible H.E. didn't want to take any chances... (And I am all about less is more in the pharmaceutical department) Great for you! ********* I was prescribed Rixafimin. $600. A month!! Even with Medicaid! Needless to say, I don't take it. (I am doing better than ever!) still curious/angry why it was prescribed- yet SO unavailable, financially. Wth!??
Wow! We are lucky here in England we get Rifaximin and all others) free on NHS (which we have to contribut to through National Insurance which you pay every month or whatever!)
Fortunately, I feel pretty good* much better than when I was first diagnosed. I imagine not drinking anymore has a lot to do with that hmmmm, would I possibly feel even better if I were taking Rixafamin?? Don't think so. My doctor could've just been trying to cover all the possible bases to quick-fix me
In the USA you can get Xifaxan free if you download the coupons from their website. You can also order them very cheap from Canada or Mexico. There are US based websites to order it from. I’ve never been to the USA but know a lot of cirrhosis sufferers from there.
Wow. Thank you. I didn't look into it. one of the women at my doctor's office was kind enough to give me a sample for a month, I never took it. I was just so disgusted at thinking having to pay $600 a month for something I've never even heard of-and don't understand- even after looking into it?? Thankfully, my attitude was positive enough in other areas of my life that I seem to have come through, or at least manage this for now. Fingers crossed
I am struggling with some confusion on organising things,remembering things and get really stressed.i am on rifaximin but not lactilose,my consultant checked and said so long as “regular “ not needed.trying to cut down on fats,cheese etc . I had hep c (treated and gone now)and chirosis (no alcohol for three years now)but depressed,no energy and yo-yo-Ing with bloating just holding it steady with spiromolactone.take colvedilol for varices,didn’t take well to endoscopy..hoping healthy diet and what little excersise I can do will help.
I empathise! I had all those symptoms but now nearly all gone post t/p. Keep going to GP and, if really bad, A&E (but don't drive there - ref insurance issues). Bet you don't sleep very well?
You seem like doing all the right things. Good luck.
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hmmmm, would I possibly feel even better if I were taking Rixafamin?? Don't think so. My doctor could've just been trying to cover all the possible bases to quick-fix me 
Very scared again
Cirrhosis confusion and medication for other conditions (cortisone injections)
Still here and in excruciating pain
Very nervous - Gastroscopy/ Varices Banding
W - K Syndrome. What To Expect?
