Rifaxamin

Hi all,

Anyone who is or knows someone o Rifaxamin 550mg do you get it prescribed by your GP because hubby is saying they can't prescribe it? They talked to hIm about it and upset him because he didn't understand. I told them to call me with medication questions.

I believe the GP can because I have dispensed them at work before.

I just want to see what other people's experiences are?

Why does everything have to be so difficult?? :(

the QE consultant prescribed it and compared to other drug out there it's not that expensive.

Cardiology challenge over, medication challenge begins.

Keep fighting on.

Xx

15 Replies

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  • Us I know of people on it . Here are the NICE guidelines nice.org.uk/guidance/TA337. I think you are right to say that hubby may be a little confused, which is a typical example of having HE , which Rifaximin will treat.

  • Thank you. I will have a look. He still does get a bit confused especially if he wakes up suddenly. Xx

  • Hello poppy, I,ve been wondering how you are. Still battling them on high I see. I don,t know if this would be of any interest to you, but there have been some interesting studies done on the effects that really good pro.biotics ( things like actimel don,t have enough good bacteria to make much difference) have on patients with cirrhosis and H.E. The group taking the pro.biotics experienced fewer episodes of confusion and less severe than the placebo group. It,s an interesting read, you can look it up on the internet. Take care. anne. x

  • Thank you. Battle more like war!!! I told his GP she should look at the liver trust website cos she obviously doesn't know enough about liver disease. I also said maybe she should sit with Hubby next time he has a drain done to see what it's like. Lol frustrated. I wonder if she will take my advice I doubt it.

    It just concerns me that they won't be able to handle his meds requirements post transplant. ( he's not listed yet but hopefully end if Dec :))

    Will look into pro biotic anything to help him feel better.

    Thank you

    Xx

  • All my anti rejection drugs are prescribed by Kings. This was also true for my Rifraximin. Hospitals have a much higher budget for prescriptions, so the GP surgery is unlikely to prescribe these drugs as I believe they are quite expensive.

  • Hubby was prescribed Rifaximin by T/P hospital at Edinburgh first but then continued on repeat prescription by GP (he was reticent at first saying he couldn't prescribe & I had to get first repeat prescription from Edinburgh. I also phoned local gastro consultant to explain difficulty and shortly thereafter GP phoned to say he could prescribe it). We've had no problems since and get a months worth at a time on repeat.

    If you can't get your GP to prescribe it I would suggest getting in touch with TP co-ordinators or hospital who initially prescribed it and get them to contact your GP - there was an issue when it first came out in that it was a specialist prescription only but it has been registered and out there now for some 4 years or so and shouldn't be such a problem especially when hubby needs it. (I know we had the same issue, I ordered it on repeat and it wasn't at chemist, GP did some squirming when asked about it and then sheepishly phoned up to say he'd made a mistake and could prescribe it).

    "Get them telt!" as we'd say in SW Scotland. Hope you get it sorted soon.

    Katie xx

  • Thank you. Xx

  • Hi poppy just a quick one,my Rifaximin was also prescribed by Hospital.Speak to a hepatoloģist they are more informed for this treatment.

    Hope this helps you.All the best ✌

  • HI Poppy

    Just as Katie said, initially rifaximin was prescribed by local consultant following discussion with Edinburgh , For the last 2 years GP has prescribed it. KInd regards x

  • I must be odd one out as both gp surgeries I was with when I was on Rifaxamin prescribed it. ask consultant to send a letter to your gp, but you should be able to check with your gp if they can or can't

  • Ive been given script by qe for 1 month but gave to go back to see how im getting on with after that.i was told this was cause of cost.not sure who will prescribe next lot ???cazer.

  • I'm sure that's why they won't prescribe it. Cost. It's frustrating because it's made a big difference. I've done my research and am going to hit the GP surgery with what I've found today. It just feels like I'm constantly fighting the surgery. Time to get past the Rottweiler at reception and prove I'm not an complete idiot. Xx

  • If you can definitely not get it from GP, get a hospital prescription. My brother has a specialist biological treatment that can only be issued from hospital pharmacies - it's massively expensive and he's the only person on it in our Health Board area. He picks it up monthly from hospital pharmacy - your hubby won't be left without if you chase it up with hospital consultant.

    All the best, Katie

  • Hi, here in UK My Hepatologist recommended it and so my doctor prescribes it for me.

    Goof luck 🍀

  • Hopefully getting somewhere. Apparently they didn't get a letter to say he was on it. Saying we saw the consultant mid October and we receive the letter a week after so I find it hard to believe they didn't get a copy. Hubby is still stressing about it so I wish they never mentioned it to him to begin with. If they'd phoned me I would have given them a copy of the letter we received.

    I know it's all about confidentiality but I'm his carer for a reason. I specifically told them to discuss meds with me so I can explain it to him slowly and gently. Sauing what the meds are for you would think they would understand that. Plus hubby gave them permission to discuss this stuff with me anyway.

    Head, hard place and brick wall comes to.mind.

    Got onto consultants secretary too so let's see what sorts it first. :)

    Xx

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