Hidden

Hi Elizabeth. I am so sorry you have lost your mother.

The only thing I know about flucloxocillin is that it has a risk if the patient has underlying liver or kidney problems. As with most medication the dosage is important. I'm sorry I do not know anything else. I just didn't want you to think we were not responding to you. I'm not sure if anyone will have any experience of this and as such might not post

Once again I am sorry for your loss. It took me 18 months to grieve my mother's passing and I hope you do not carry this pain with you for that long.

Dave

Ebooth in reply to Hidden

Thanks Dave, yeah mum was diagnosed with a fatty liver 6 years prior. Not alcohol related. It was the highest dose of flucloxocillin prescribed 6 times over a short period of time.

Thankyou

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Jay986

I’m so sorry for what you are going thru… I lost my dad to somewhat of a mistake/failure on behalf of medical staff… I gotta be honest with you, knowing it/proving it didn’t give me peace. If you’re gonna go down this road make sure you know why you are walking it.

-Jay

Ebooth in reply to Jay986

I’m sorry you lost your dad. It’s so hard but yes I won’t let it go. The dr was aware of my mums fatty liver yet gave her these antibiotics within such a short space of time without even seeing her to investigate why he was prescribing them. She was denied a transplant for 6 months even though they knew of her antibiotic use and her use of alcohol been minimal. The hospital treated her like crap, just gave up on her. So I can’t let it go. I need to prove it for my mum and others. After all flucloxocillin is banned in many countries around the world for causing liver issues but the uk decided to ignore regulatory advice. Thanks for your reply I appreciate it. Elizabeth x

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Jay986 in reply to Ebooth

Power to you, I wish you luck and peace

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Ebooth in reply to Jay986

Thankyou. You too

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Dililiver

Hi Ebooth I am so sorry to hear about the loss of your mum. This message has really resonated with me. There is absolutely a proven link between flucloxacillin and liver failure and I am, thankfully, living proof of this!

I was prescribed a 7 day course of flucloxacillin for a sebaceous cyst in November 2019 and then had a further 3 days on it after the cyst was removed, so 10 days in a row in total. About a week later I started feeling very very ill, constant nausea and fatigue followed by jaundice, and a horrendous itch all over my body.

I was referred to the Emergency Department and eventually, after MRI, U/S etc, was diagnosed with a drug induced liver injury from fluclox. Although I was reassured by my GP and the ED doctors that I would get better over a couple of weeks, my condition deteriorated in December and January and I was finally admitted to hospital for a liver biopsy where I was diagnosed with acute liver failure/Vanishing Bile Duct Syndrome secondary to flucloxacillin liver injury. I was assessed for transplant and put on a watch and wait list. My hepatologist was very pessimistic as my liver biopsy showed 1/13 viable bile ducts but after about 6 months my liver finally healed itself and I have now - 2 years later - made a full recovery.

Like you mum, I was not a heavy drinker and I have never used recreational drugs. I also had no underlying medical conditions at all, a recent fibroscan has also proven that I have a healthy liver, not fatty, no fibrosis (all of which helped me to recover). I was 48 years old at the time. The diagnosis was unequivocally due to flucloxacillin. I was treated at the national liver unit in Ireland and was told they see only about 1 case a year like me (though I was particularly severe) and transplant in about 50% of cases.

I don't know your mother's medical history of course, so I can only tell you mine, but there are a few articles you can read if you are looking for some evidence to back this up. In some countries - US perhaps and certainly Australia - fluclox is not prescribed because of this very rare but very dangerous adverse reaction. You've probably seen them already but the articles on VBDS are very relevant

pubmed.ncbi.nlm.nih.gov/820...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/books/NBK5...

Again I am so sorry for your loss. Very happy to answer any other questions you might have.

Niamh x

Ebooth in reply to Dililiver

Hi thankyou for getting in touch with me. All I can say is I’m sorry you’ve been through such a bad ordeal with this drug. I know in my heart that this is what caused my mums liver failure and I will without fail prove it. My mum was diagnosed with a non alcoholic fatty liver at 60. She ate healthy walked a lot and was in good health so no major concern. She had high blood pressure also. At 65 she developed cellulitis so was given a 14 day course of 500mg flucloxocillin and it cleared up. 2 months later the infection returned so again another 14 day course was given. Then a month later the same. During these antibiotics been prescribed the dr did not request to see my mum not request a picture of the infection or bloods to check her liver and kidneys could cope with the large amount of antibiotic. NOTHING. I started to notice swelling like edema in my mums lower limbs and she had slight jaundice too. Along with a swollen stomach (ascities) so took her to A&E, this was around 2-3 months after antibiotics. They sent her home and said she was fine. The very next day mum couldn’t get out of her was confused and very poorly. Took her to hospital they said it was cancer. It’s wasn’t cancer. Then after 2 days informed us it was her liver. Even after been made aware by myself of the flucloxocillin intake they insisted the issue was alcohol. She rarely drank. My frustration is that if they looked into the flucloxocillin been the reason mum could still be here today as could have had a transplant. Instead they put her under the easier category for a liver issue and basically left her to pass away. I had read countless studies from worldwide and all evidence suggest flucloxocillin can be lethal for the liver especially in woman over 60 who have been prescribed multiple courses. No one will listen to me and I just know in my gut that I’m right. So I will prove it and hopefully get flucloxocillin taken off the market in the uk so this doesn’t happen to anyone else.

Lots of love

Elizabeth

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Dililiver in reply to Ebooth

Elizabeth that is so hard to read, you're obviously very well up on the dangers of the drug. Was she ever offered a liver biopsy? Or referred to a hepatologist?

It was only at the biopsy stage that my fluclox injury was confirmed. I was very unlucky that this happened to me but very lucky that I was taken care of in the national liver centre as I had the best in the country looking after me and was a patient of the liver transplant clinic long after my bilirubin had returned to normal (one year after the drug). My bloods were all finally normal after 2 years. They are still keeping an eye on me, though they don't need to see me for another 2 years and I am now with the liver clinic (not transplant clinic).

I am so sorry again as it sounds like your mum didn't get the same level of care that I did. I know quite a few doctors and they were stunned and amazed that such a commonly prescribed drug - in Ireland anyway - could cause such a catastrophic injury. It really was the hepatology team that made all the difference to my care, the GPs and ED doctors didn't get how serious it was.

Mind yourself x

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Ebooth in reply to Dililiver

No my mum wasn’t given a biopsy. They only gave her an ultrasound scan to diagnose cirrhosis. No fibro scan given either. My mum died from an internal bleed as her portal vein was under too much pressure. I pleaded with the consultants to listen to me but they didn’t. As you can imagine my mum had 6 courses prescribed so her liver was well and truly knackered and they kept saying stop drinking and we promise it will improve. My mum didn’t have any alcohol for 3 months and her liver function got worse. It really plays on my mind everyday as I want to prove for my mum mainly that the reasoning was the antibiotic and not an odd glass of wine. She was only 66 and a fab mum and grandma and wife. It’s so unfair as they basically just laugh at me but the information regarding the dangers are there in black and white to see. In 1996 warnings regarding the dangers of flucloxocillin were sent to the uk but sadly ignored. How can this be? The hospital treated my mum like utter crap and we couldn’t be there to help and fight her corner because of Covid. Where has humanity gone because in my eyes what happened is practically murder and negligence from both gp and the nhs.

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Dililiver

She was too young and she sounds like a lovely woman, I am so sorry Elizabeth, I hope you find some answers xx

Ebooth in reply to Dililiver

Thankyou. Xx

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Ewife

Hello,I'm so sorry for you loss. My husband has cirrhosis which is labelled as alcoholic but was more likely caused by prescribed painkilling drugs. All Drs ever focused on was the alcohol even though he didn't have any issues around problem drinking. He did however enjoy a drink, and it's thought that it was the fact he drank alcohol alongside the drugs which probably caused the damage. With this factor, we cannot hand on heart say he was blameless although if we had been better educated about it all he definately wouldn't have been drinking!! I do find it hard to think that the GP was merrily still prescribing the drugs (over 10 years) and even once Cirrhosis was diagnosed, even his Consultant didn't think to question what medications he was on until several months in. It was only once he stopped these, he stopped declining so rapidly, but had been abstinent from alcohol for nearly a year by this point.

However, we have discussed this many times between ourselves and decided that it won't make us feel any better pointing fingers or following it up. Once my husband became decompensated we have received fantastic treatment and are utterly thankful for this.

I truely hope you can reach some peace of mind over your Mums death - I have recently experienced bereavement too and it's horrific to deal with, especially if you have questions over the big "WHY" 😢 Take care of yourself

Xx

Ebooth in reply to Ewife

Hi. Sorry to hear of your husbands cirrhosis journey. Prescribed drugs can have a huge effect on the body and I feel such reviews should frequently take place to ensure the individuals body is handling them ok as we all know everyone reacts differently to everything, including alcohol. Unfortunately flucloxocillin has had many reports and studies done on it and it is classed as a cause of cholestatic liver failure, however no one will or would listen to me for this been the cause for my mums condition. She had 4x a day at 500mg for 6 weeks with a few weeks in between. This should not have been given in my opinion with it known that my mum had a fatty liver. I hope your husband is doing better now and is off the medication previously prescribed. I’ve read so many articles regarding many ailments that can effect the liver, green tea been one. It’s crazy what can cause such injury in a person. Just please all steer clear from flucloxocillin. It’s not safe x

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Ebooth in reply to Ewife

So once he stopped the medication his liver started to improve.

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Ewife in reply to Ebooth

Unfortunately, not really. He is decompensated and although luckily remained stable through medication (yes, a hard one to swallow - scuse the unintentional pun!) But has a UKELD score of 59 and is awaiting transplant. He is only 42 and we have 3 young(ish) children. ☹️Some of us have all the difficult things in life thrown at us for some reason but we have to try and keep positive and keep strong.

💪 hang in there.......Xx

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Ebooth in reply to Ewife

Aww I’m so sorry. I’m praying for you to get the transplant needed. I’m hoping myself to donate part of my liver to someone who needs one to help but haven’t started looking into this as yet. All I can suggest is herbal teas maybe for him like dandelion or milk thistle. And keep a healthy diet but I’m sure your been directed on what’s best to do. Feel free to message me if you ever need anyone to talk too. Caring for someone you love so much can be hard and confusing so anything I can do I’d be more than happy to help x

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Ewife in reply to Ebooth

Thank you! I try to cook everything for him from scratch in the main. This gives me great satisfaction and makes me feel like I can do something to help. We steer clear of ANY kind of tablet - even herbal/supplement type thing - I think this is partly because I'm paranoid after knowing what medication did to him all those years. I don't trust anything anymore 🧐😂 just feed him on pure organic foods, homemade so that I know exactly what's gone in there. My inner control freak coming out!!!We have had great fun exploring many different drinks out there - never missed alcohol once.

I'm desperate for his transplant to happen soon though. I can't face watching him get any worse. Our family has been through so much, we're ready for things to go right for a bit now, and a chance to move on with our lives .

Xx

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Ebooth in reply to Ewife

Praying for you all. Seems like you have everything under control and I’m sure the great work your doing will pay off. Keep strong that transplant will come and I wish your many happy years as a family xx

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