issues with Rifaxamin

[Morgan63]

Hi everyone,

My wife was prescribed Rifaxamin about a year and a half ago and all went well until before Christmas when collecting all her meds the Rafaxamin wasn’t available but did come in to the pharmacy within a couple of days.

Now we are being told at the pharmacy it is not available at all and we have been waiting for three weeks since the last prescription was due to be filled .

Is anyone else having the same problems getting Rifaxamin from their pharmacy.

we have asked my wife’s consultant at the hospital about problems with supply of this medication but he wasn’t aware of any issues.

If anyone has any advice on how to get over this problem it would be much appreciate.

Kind Regards.

[golly123]

Hi. I would ring 111. They should be able to give you a prescription for this or advice. I was on rifaximin too from July 2021 until November 2022. My hepatic consultant took me off this medication last November.

Hope 111 can help. Best wishes Golly

[Morgan63 in reply to golly123]

Thanks Golly for advice that’s definitely worth a try , having seen my wife with H. E, we don’t want to go back there again and the Rifaxamin has definitely help as she hasn’t had an episode since she has been on it.

Glad to hear your consultant has taken you off of it and hope all is going well for you.

Many thanks.

[golly123]

Hi. I thought it was HE. I had that in August 2021. Guess your wife is also on the tasty toenail one - lactulose yuk. And docusate. As said I was taken of the rifaximin. Not had an episode of HE since 2021. I have never touched any alcohol since and went from decompensated to compensated. I still have cihrossis but it's the compensated one now. All my fault. Hope you wife is OK. I send you my very best wishes. Golly x

[Morgan63 in reply to golly123]

Hi Golly 123

Yes wife is on both but not been prescribed docusate . It is great news that you have gone from decompensated to compensated.

Also not touching alcohol is a massive step and all helps with this terrible disease.

Hope all continues going well for you.

Regards

Morgan .

[Maison2023]

We had an issue with Zeffix , our local Doctors said they werent willing to give us ,so we went direct to the transplant pharmacy at Addenbrookes and have no problem .we live a distance away but they post to us

it may be worth asking you hospital pharmacy

Good Luck

[Morgan63 in reply to Maison2023]

Thanks Masison2023, appreciate advice, we will contact the hospital and give that option a try as getting no joy with high street pharmacy.

Thanks again.

[Ewife]

Yes, we have this problem. Our area deemnit as a "red" drug and has to be prescribed by hospital pharmacy only - which is an hour and 20 drive away.Hepatologist said its quite common problem with this drug. He prescribes a 3month supply when we go, and we get it from the pharmacy there.

A few times, he has run out and the pharmacy have sent it TNT at no cost to ourselves. Really impressive.

[Morgan63 in reply to Ewife]

Thank you for your advice , we didn’t realise that the hospital/ consulate could help in this way only dealt with GP and local pharmacy after my wife was discharged from hospital, it does get stressful when you can’t obtain the medication you need when you know it is so important. Thanks again for good advice.

[DD75]

My husband has recently been put on this after being in critical care. He's been on lactulose for a year and turned out he should have been on rifaximin also but it was missed off upon discharge from hospital last year.

GP wouldn't prescribe it when it ran out last week as discharge notes on medication said follow up with gastro after rifaximin. So my husband went to hospital ward who spoke to his consultant and they issued it for him.

Maybe contact the hospital/consultant your wife is under and they may be able to issue via hospital. I think there is a shortage but I'm not positive.

I had similar issues years ago with my mum over a medication gps wouldn't give her and after attending A and E and a no its not urgent (it was she was a diabetic, had no pancreas and couldn't eat without the tablets) my mum rang the ward she'd been on for treatment and operation and they sorted it for her.

Hope this helps.

[Morgan63 in reply to DD75]

Hi DD75

Glad to hear your husband is now on the right medication . My wife had a bad episode of H.E shortly after having a TIP, s procedure. The hospital was brilliant getting her in very quickly and getting her on lactulose and Rifaxamin. Touch wood she hasn’t had another episode of H.E since so both these medicines have worked really well.

This is why we were getting really concerned when not being able to source the Rifaxamin, but after getting all the kind advice here on the forum from everyone hopefully we will be able to resolve the issue.

Not sure if your husband is being treated for the same condition but if he is hopefully the two medicines will be as successful for him as it has been for my wife.

Thanks again for your help,

[DD75 in reply to Morgan63]

Hi,

Thank you for your lovely reply 🤗

Do you know I think you're one of the few people on here who I've encountered who knows someone who has had TIPPS!

My husband apparently should have been given rifaximin when he left ward after being on critical care for a month last year after the diagnosis of cirrhosis/portal vein blood clot was given after he had hemorrhaged due to unknown to us oesophagus varices which erupted (he no longer has oesophagus varices 🤞).

He's now diabetic and has to have fragmin blood thinner daily for blood clot in portal vein also they think he has a genetic condition as he is missing 2 proteins from his blood.

But the rifaximin seems to be working great. He was originally on lactulose and spironolactone but they've stopped spironolactone after he ended up in critical care at hospital recently with suspected sepsis (he broke his knee and wrist late January and apparently fracture clinic should have taken cultures to check but who knows) and he was severly dehydrated.

He's waiting to see if he can go back on it now he's home as his ankles have swollen terrible and he's in agony which he says is because ascites must be building up again without the spironolactone. But his GP just always says no and to go back to hospital to get meds 🤦‍♀️oh its a very frustrating boring story i honestly wont bore you with it 🤣👍

🤞 it will all get sorted he's definitely more alert and his appetite has improved 👍.

Hope you're wife is ok do try the hospital honestly it's probably your best bet 👍 please let us know how you get on.