I was admitted in June with ALT of almost 3000 and bilirubin 130, jaundiced and ill. After ultra sound, CT scan and biopsy , moderate hepatitis with mild fibrosis was found . Possible causes alcohol (I did drink, probably unhealthy levels but not dangerous eg 30 units a week) or drug injury (I had had a severe tooth infection and had 2 v strong doses of amoxicillin and caned the painkillers - paracetamol and ibuprofens) or autoimmune hepatitis.All sources of insult were stopped and within 3 mo the I was doing well and ALT was down to 325 ish and bilirubin normal. No meds or alcohol have been used since June to this day. Apart from 2 doses of paracetamol for shoulder pains and Imodium after i overdid the lactulose one time!
suddenly I felt symptoms returning again and went for bloods to find ALT back up to 1525 and bilirubin 40 and looking jaundiced again. All too familiar.
I have been now prescribed prednisolone for 4 weeks and am suddenly feeling much better. Bloods will be retaken each week. So we will see if this has been effective. The doctor did think it had been a DILI but now is leaning towards autoimmune . Has anyone had any similar experiences? Thank you
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Lurcherliver
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A positive response to prednisolone and the fact you have 'flared' would seem to point to autoimmune hepatitis. Did the biopsy not indicate which cells were involved and give a firm diagnosis. Often a liver biopsy is necessary to confirm an AIH diagnosis together with presence of auto immune antibodies.
Usual treatment protocol is prednisolone (or Budesonide) steroids to act as a fire extinguisher to bring down the initial inflammation/flare then gradually wean down steroids and introduce an immune suppressant medication (often Azathioprine is first choice) and this acts like a long term sprinkler system to keep the immune system tamped down to prevent future flares.
The fact you have flared with all other 'assaults' on the liver dealt with certainly seems to lead AIH way. Read about AIH at the BLT website so you can prepare appropriate questions for your next consultation. britishlivertrust.org.uk/in...
There is an excellent AIH support group on Facebook with almost 4.5 thousand members who all either have AIH themselves or like me have supported a loved one with the condition. facebook.com/groups/AIHorgUK
Thank you Katie for taking the time to reply in such detail with great knowledge. The biopsy didn’t say a lot apart from mild pericellular fibrosis and no portal fibrosis seen (0) which is why the consultant wanted an expert opinion and we are still waiting for that. Auto immune screen came back negative though and we are still awaiting the results of a blot test.
My hubby had autoimmune related cirrhosis - his antibodies tests indicated there was something along those lines though biopsy revealed no ongoing activity and he was labelled as having burned out autoimmune hepatitis. He had decompensated cirrhosis by the time of his diagnosis and it came completely out of the blue. When he had his transplant earlier this year they've now said he had both autoimmune hepatitis and primary sclerosing cholangitis (another autoimmune liver illness).
He's been on prednisolone since 2014 and they've said he'll need to remain on it now even post transplant as his body has probably gotten so used to it he'll not make his own. He's also on azathioprine for anti-rejection along with tacrolimus but wasn't on an immune suppressant previously.
Hopefully they'll get to the bottom of your issue and get you on the correct treatment pathway.
Oh my goodness that’s an awful lot to deal with and must have come as a dreadful shock. Sounds like you are very supportive and knowledgeable . I am wondering if it is a drug induced autoimmune response. It’s odd that the autoimmune screen was negative in my case. Who knows. I’ll just have to wait and see
That's what we think triggered hubbies AIH - he was on an antibiotic for acne years ago which his GP just kept repeating rather than sending him to dermatology. No blood tests or monitoring was done and what 2012 he ends up vomiting blood and we get told he has decompensated cirrhosis. At least they've picked yours up at a point where hopefully it can be treated and further deterioration prevented.
Scary what medication can do. I didn’t realise and was far too blasé about taking all the painkillers I could alongside the antibiotics. In the end I insisted she took the tooth out. I’d rather have falsies any day than this! Never again!! All the best and thank you again
Hi Katie. I was indeed diagnosed with sero negative AIH today by the consultant from expert opinion on the biopsy and flare and response to prednisolone, and he seemed to think it was the antibiotics for the tooth infection that triggered it.
It’s kind of good to finally get a diagnosis and a plan . Azathioprine once the steroids are tapered off after blood levels reduce.
Glad you finally got an answer and a treatment plan put in place. Fingers crossed the meds get everything under control. We arn't doing too bad thank you, hubby now at 6 weekly gaps between clinics so we've managed a bit of a rest after all the toing and froing.
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