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
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eljd
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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.
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.
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.
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!
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.
Wow thanks so much for replying with your story, it seems like it’s so rare to happen, your recoveries have given me hope…
My liver biopsy came back and they confirmed drug induced liver injury, however I have been off the anti biotics since end of April/start of May, and my ALTs have gone like this:
8th june - 305
14th June - 520
20th June - 890
24th June - 897
2nd July - 520
Yesterday - 540
I know you mentioned it took a few months for yours to go down and stay down, was it a continuous downward trajectory or did they go up and down in that time? The liver doctor said they’ve not seen this pattern before, it’s so disheartening to see it jump down but go up slightly, you would think they would just be going down if I’m not on the antibiotics anymore…
One more thing, you mentioned the nausea, that’s my biggest symptom, but the liver doctor told me I shouldn’t be feeling nauseous as my bilirubin level is in range… I’m not sure I believe him? I don’t know where else the nausea would be coming from, reading people’s experiences it seems like nausea is common
I hope to make a full recovery like you both, it’s really hard to stay hopeful when everyday is the same feeling no better, no one can give a timeline, I’m worried about it taking 6-12 months
My liver tests fluctuated like yours I would get really positive if they had come down then the next it would go back up my consultant said not to worry too much they can fluctuate I still have high Alphos and GGTs but not like they where in the beginning I think it takes time ..
I’m a bit late to the party but only just found this thread, through searching.
I took amoxicillin (a couple of really high doses) and too many NSAI painkillers after a tooth infection and this also caused a DILI. I felt unwell, nasuea, poor appetite , fatigue, itchy and jaundiced . Went to the GP who sent me for urgent bloods and they rang me at 3 am to tell me to go straight to A and E. ALT was around 1500. A couple of days later it had gone up to almost 3000. Bilirubin 130 ish. Ultra sound, ct scan and biopsies were done - I was in hospital 3 weeks waiting for a biopsy. Once it was done I could go home. They weren’t treating me, apart from a couple of flush type drios when I was first admitted. just taking bloods daily and monitoring.
I waited 4 weeks for the. Biopsy results and it was suggested a DILI or autoimmune, or ARLD. Autoimmune screen was negative and I didn’t really drink enough for it to be ARLD although I did drink alcohol previously.
ALT slowly went down and also fluctuated or remained static so instead of doing weekly bloods they did monthly bloods. 4 months later ALT is about 325. I feel better and am regaining weight (lost a stone) but I don’t feel great . I may find I feel really worse and poorly for a week or more and feel like I’m going backwards. The nausea and lack of appetite is the worse along with fatigue. I’ve also had a few bouts of gastritis which I’ve never had before. It feels like it’s going on for forever but my dr said it could be at least 6 months. I have really had a healthy diet (couldn’t eat solids so bought a nutrition bullet and made lots of fruit smoothies), haven’t touched alcohol for 4 months or more, . Bilirubin is back to normal so itching is no longer a symptom . I do know how you feel and wonder how you are getting on and hope your symptoms are better now. It’s dreadful feeling like this . Sleep is also very poor. Do let me know how youve got on?
Omg thank u for replying, I’m always checking here in the hope of some kind of validation - not many people get DILI’s 😩
So sorry to hear u are going through this too, it sounds like u have better doctors, every one I’ve seen tells me that they’re shocked I feel any symptoms at all which instils terror into me because I have nothing to compare this to and I’ve never felt these symptoms before, being nauseous everyday since May has been mentally exhausting, I’m still housebound and it’s been 5 and a half months since my symptoms first started
My ALT is currently at 101, it’s hung around this mark for over a month with all the other enzymes going up and down - not scary high like before but fluctuating
In terms of timeline, no one has given me one, I’ve heard “months” and when I’ve checked online, other ppl have said they make a full recovery after 5 months, I am still feeling nausea everyday, and this dull sensation in my abdomen that’s kind of hard to explain to anyone, I just know it’s not normal for me. I’ve been out of work this whole time, and feeling like life is passing me by, it’s truly awful
I’m not allowed any medication, are you? I’ve asked for anti nausea meds, they said not until my liver function returns to normal, I wish I knew how long this would take. Do you have any hair loss too? I’ve lost most of my hair which has been confronting and shocking, I had no idea that it could do that
It’s good to hear u have noticed a change since your ALT started dropping, I hope u continue to feel that, and hopefully u recover quicker than I am. Please keep me updated, it feels pretty lonely when u can’t find anyone going through the same thing
I’m also relieved to find someone I can talk to. I haven’t lost any hair but I have found I feel worse this week, bloated, feeling like the liver area is “crowded” - it’s not fluid thankfully, loss of appetite, nausea but worse, the itching has returned. I was given colestryamine for this and did stop but I took some last night as I was itching like mad and this is worrying. I am also not allowed any meds. The hepatic nurse said scores and measurements and calculations etc are going on in the background after bloods and they state I wouldn’t benefit from steroids at this point. I do t know why the itching would return, which suggests a rise in biliRubin again, when I haven’t taken any medication or alcohol for months. I started feeling ill in May and was hospitalised in June so pretty similar time frame to you I think. I did take some paracetamol this week for shoulder pain that has come on but only 2 doses and I don’t think that’s enough to send the liver into shock again. I’m like you. I also know I’m just not right and previously was fit and well on no medication. I can’t help being scared at this return if the itching
I can relate to you a little! This time last year I was in hospital for 7 days with a systemic infection, I also was 29 at the time and needed antibiotics through iv. The doctors noticed through blood tests that my liver function blood tests were ‘deranged’ and kept rising so they sent me home to wait on an MRCP/ liver mri and Fibroscan.
It was a very long wait until January for my mri.
The results were that I have an enlarged spleen of 19cm and had a lot of fat on my liver ‘all damaged’ along with a tiny cyst. It was also mentioned on the report that NASH cirrhosis was possible. But nothing was done yet again as even though my bloods were rising, the consultant still wasn’t worried.
In March of this year I was admitted to hospital for 8 days for high fevers- the bloods were still very high and so through all my scans and blood tests I was diagnosed with cirrhosis, the enlarged spleen was still up and I developed type 2 diabetes.
It was so hard to take in at 29 but I know that it could’ve all been prevented, had there been more tests done this time last year, while I was in hospital.
The cause was diabetes (which started in February) and obesity. So I started to drink water only- nothing fizzy and changed my diet.
So far I’ve lost 3 and a half stone and put the diabetes into remission.
I went for the Fibroscan on Monday with a cap score of 254 (the fat is reducing) and my kpa is at 23.9 (which is high- although my bloods just suddenly dropped from deranged to normal including all my LFTs and inflammation bloods) now I’m waiting to see what’s happening as I’m developing more ‘worrying’ symptoms.
Anyway, the first time I was in hospital (last September) the doctors initially thought I had taken too much paracetamol due to being in pain, they all looked down on me at first but it was quickly ruled out. Then they thought the cause was a blocked bile duct or gallstones but the scans showed this wasn’t the case.
It’s all been so confusing!
Hopefully getting somewhere now.
How have you been?
I’m housebound also with pretty bad symptoms, the lack of energy is getting worse as each day passes.
Also feeling confused, nausea as well with headaches and pain in my upper right and left stomach.
Staring at 4 walls isn’t helpful either as it’s affecting me mentally now (depression)
Anyway, I just thought id share a bit of my story so far.
Nice to hear from you Laura and sorry you are going through this too. I know the feeling as at first they all thought it was alcohol that had done it and I was given a drip that is used to treat paracetamol overdose and a vitamin drip that is used to treat alcoholic hepatitis and this made me feel ashamed . Maybe it was in my own head as the staff weren’t really looking down in me but at handovers they discussed me audibly on the ward as having alcoholic hepatitis and I knew this couldn’t have been the case but you feel you’re not being believed. Then it changed after the CT scan and was suspected drug induced hepatitis as they said fibrosis was present but very mild and possibly due to age and this condition..
The nausea is awful and I feel like the lack of information or someone to talk to is bad. It’s easy to get stressed in an information vacuum and over think things. I’m so sorry cirrhosis was diagnosed and do hope you are able to continue to eat healthily and feel better soon You’ve done amazing to lose so much weight . I believe the repair work is hard work and can make you feel quite ill so I’m just hoping it’s that that’s making me feel rotten
I don’t think the paracetamol would’ve done further damage but I was told to steer clear of everything including paracetamol/ibuprofen because it can’t be broken down as quick as it should so it’s just adding to the build up of toxins
Are you able to go to A&E if itching persists today? I’m always nervous of a bilirubin rise too it’s the worst, luckily mine was at 23 as of 2 weeks ago so much more close to range
It’s frustrating when doctors tell u to focus on the good signs in blood work when u still feel so awful, especially when it fluctuates so much like u have seen with bilirubin, mine has gone up and down too. I actually can’t imagine feeling better anymore because it’s been so long, everyone says it will get better but WHEN 😩
I like you also have no appetite, I lost a lot of weight at the start but I’ve managed to maintain this last month, whenever I eat it’s usually something small, I regularly have avocado with pumpkin seeds, nuts, dark green veggies, some chicken - I’ve been told that eating these things give the best chance of liver healing even though the damage was done by treatment, it almost feels pointless to do that but I will try anything, also beetroot juice which is not pleasant but good for the liver, try fresh lemon water, and add ginger too
I’m trying to imagine feeling better at Christmas but each month that passes fills me with disappointment and less hope, I wouldn’t wish this on anyone
Hi eljd, I’m still trying to get used to this site. I read your post but replied to lurcherliver and the paracetamol was mentioned as a response to my reply intended for you- sorry for the mix up! I’m feeling similar right now. Please look above for my post-
Thanks for your reply lurcherliver!
I needed the iv to cancel out the paracetamol too- turned out I took an allergic reaction from it though!
Hi. I eat similar to you as healthy as possible but just can’t face meat or bread products for some reason. I’m not going to A and E. I have a blood test due on Friday and a consultation outpatient appt on 16th October so I’m going to wait. I can’t face another stay in hospital and it’s not as bad as it was so I’ll just continue with the anti itch powder for now . Thanks for your reply. It’s good to talk
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