potential DILI - advice?

[eljd]

hi everyone,

I’m 29F, at the end of April I was hospitalised for e-coli, given anti biotics and PPI’s through my IV line for 3 days, then continued on oral anti biotics with PPI’s for 5 days

My symptoms continued and my ALT/AST are at 952/370 and continuing to rise still today, I feel awful, nauseous all day, no appetite, dizzy - everyday has been the same since April, no improvement

I am due to have a liver biopsy which will rule out other diseases but I wondered if anyone has or knows of anyone with a similar experience? I can’t find anything online other than I could feel like this for 6 months to a year if it is DILI

I don’t know how anyone can live like this

thank you for taking the time to read if you did

[MINTVCX]

I think you have to wait for your liver biopsy. About DILI you can ask here about "similar experience" but every case is different and you should not compare it to your situation. It might be misleading. Good luck and you have to trust your doctors.

[Dililiver]

Hi I am so sorry to hear that you are feeling so awful. I can certainly relate to that as I suffered a DILI back in November 2019 from which i eventually made a full recovery. Still lurk on here to share my story as it was a very rare event so possibly helpful to someone else.

Below I've pasted a reply I sent some time ago to someone in a similar situation. I would really like to stress that DILI is a diagnosis of exclusion once everything else is ruled out. I had CT, MRI, Ultrasound and a ton of blood tests first before the biopsy showed Vanishing Bile Duct Syndrome which thankfully resolved itself. Also my case was extreme so please don't think you will be the same! But it does show that even extreme cases can improve once you start taking really good care of yourself.

I wish you the absolute best of luck and recommend the biopsy and speaking with a liver specialist dietitian if at all possible. My worst symptoms were nausea and itching. The nausea was helped by adjusting my diet but don't do this without expert help.

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Hi there my story is very similar - I took flucoxacillin in November 2019 for 10 days orally and it gave my liver a huge whack, all bloods deranged and at its height my bilirubin hit 466. I was admitted to hospital for a biopsy which showed extensive damage to my bile ducts and, for a while, it looked like a transplant was inevitable. BUT, over time, with careful watching and waiting, my liver made a full recovery. It took about a year and a half in total I think for the bloods to completely normalise, but I felt and looked fine by the end of the first year.

[ODP1963 in reply to Dililiver]

Hi

Sorry to hear that your not to well just wanted to share my story

Back in November I took fluclox for seven days after finishing the course around 9 days later I started to itch terrible and dark urine. Over the next week or so I started to go really yellow I just didn’t know why, as someone who works in nhs for 30 years I thought I had come across most things it was scary. I went to see a gastroenterologist where I work who said it could be a reaction to the fluclox but could not confirm and had to rule everything out.

Over several weeks the itching increased where I could not sleep I had scratches all over my skin but no rash it was like ants crawling under my skin, my stools where so pale. dark urine, nausea with jaundice. I stated to lose weight with the nausea it was horrendous. I had MRI, MRCP and multiple scans including ultra sound all came back clear I was so worried like yourself and found this forum which helped.

I knew I wasn’t alone and I found someone had posted who mirrored my experience as no one had heard of fluclox reaction. From the start of it in November 23 until beginning of January 24 the symptoms continued I was so worried. In November my bilirubin was 175 ALT 55 and Alk Phos 367 it remained like that until around week before Christmas when it started to fall slowly I now have normal bilirubin and ALT my Alk Phos remains high at 167 and fluctuates my GGT remains high at 168 but I feel great in myself and went back to work end of January and have put the weight back in I lost a stone during the time I was poorly. I had a fibroscan two weeks ago which was normal. It was such a scary time as a 61 yr old female who was fit and well going to gym it was a big shock.

I hope you get to the bottom of what is going on and wish you a speedy recovery I found this site and the liver trust really helpful I rang them in Dec 23 as I was so worried I just wanted to share my story to say your not alone take care.

[Dililiver in reply to ODP1963]

Your story is so similar to mine, the doctors in my case were amazed that taking fluclox for such a short time could cause so much damage. All my symptoms were the same the itching was the worst and exactly as you describe. As far as I can remember my GGT and ALP also took the longest to normalise - long after I felt well again - so hopefully that will be the same for you. I’m monitored every two years now, last time was in November, four years after I took the drug, and all good thankfully. You’d wonder why they prescribe it at all? Such a rare adverse reaction but so serious!

[ODP1963 in reply to Dililiver]

Hi

Thanks for replying it may of been your story that helped me as no one had heard of DILI only the gastroenterologist I went to, everyone else said no way antibiotic could do that you. I hope my GGTs and Alk Phos follow what yours did 🙏 fingers crossed it’s been seven months now and still shocked by what happened.

Thank you