Im getting another opinion on a liver biopsy from John Hopkins. Pathology notes some inflammation, my doctor was never told it was PSC or AIH, but she’s certain it’s one or the other regardless of the actual biopsy. She wanted specifics that they didn’t do and (they) chalked it up to mild drug toxicity, which is why she wanted another opinion since I’m not on anything that’s cause that.
Has anyone else gone through this?
All other tests showed I have PSC. My liver biopsy was normal. I’m not relying on the liver biopsy other than to guess I’m in the early stages of PSC as you may be. I continue to have the sudden fever/chills, vomiting/dry heaves, & itching about 1 day a month. The next day I have a lot of weakness. Does all this sound familiar?
The bloodwork showed PSC (the enzymes) but the MRCP was clear. I’ve really only had incredible itching, the upper abdominal pain, and the fatigue. The itching and the pain fluctuate, but the fatigue is continuous
Merrywhite,
Regarding clear biopsy. One thing to remember. PSC is a disease of the bile ducts if the liver. When first diagnosed you have a perfectly healthy liver, but over time the scarring and strictures that form in the ducts cause lack of bile flow. Then liver cells begin to die and then cirrhosis comes in its various stages. This probably means in your case that the disease is the in the early stages.
I hope this helps.
Mark
More tests like an ERCP will show whether it’s definitely PSC. It sounds like it may be but follow up on more testing.
Mark, that’s what I figured. Early PSC. Luckily no scarring of the liver, yet.
I am not sure you could be absolutely sure for PSC by only blood tests . Actually how could you be sure of PSC at all when you don’t fit most of the symptoms ?
I actually have family with the disease and I already know that I’m at a higher risk of it just from having UC. My doctor was nearly positive it was (small duct )PSC and/or AIH since I do have elevated enzymes and the pain/itching/fatigue, but everything else looked fine except the liver being mildly inflamed.
Wait, I thought itching, fatigue, and pain were common indiction of PSC?
Hi Autoimmunetothestars
Are your liver enzymes trending up or down? You mention that you’ve not been on any medications that cause liver issues but drug reactions can be idiosyncratic and the main way of determining whether there’s a dili (drug induced liver injury) is by how liver enzymes recover or not on withdrawal of the drug. Liver biopsy is not so helpful in diagnosing dili which can mimic any primary liver disease.
I agree with TNA. An accurate diagnosis of PSC cannot be determined only by blood work. The gold standard for large duct PSC diagnosis is an ERCP procedure. For small duct, you would need at least MRCP imaging and possibly a biopsy. Elevated LFT’s can be caused by a number of medical problems. Sometimes, people who have had their gallbladder removed will have temporary elevated LFT’s, others for different reasons. Make sure you are seeing a hepatologist for this possible diagnosis, not just a regular GI doctor. Good luck.
Mark
I’ve had weird trends with it. They’ll stay at a high elevation for several months, drop a bit, then go right back to being high again. I got checked for everything from Wilson’s to PBC, they gave me an MRI and an MRCP, nothing on either. I’m very well on my way to ERCP if the liver biopsy is showing something since there’s no antibodies or anything. (I really don’t want to have IPAA surgery to finish the pouch and be on prednisone. Pred/Entcort was an option )
Im more less just on minor things like low dose vitamins and I no longer need ulcerative colitis medication with the ostomy. I dont even take pain medication. I find medication for pain pointless in my case since I can only have a very narrow selection anyway.
The last real prescription I had was prednisone and, maybe, Entyvio if it still stays in system? (A month before the surgery) Otherwise, I’ve not been on anything since then. My surgery was almost a year ago
Is it possible for the UC medication induce AIH? That was one of the concerns raised during the talk about the second opinion, that my medication might’ve triggered the reaction inadvertently.
Unfortunately none of this is really consistent with a dili. I guess the problem with liver biopsies is that you have to take it from the right spot as my understanding is that you can have normalish areas and areas of fibrosis. If your MRCP is normal and your large ducts are not demonstrating any abnormality then small duct PSC is a possibility and you need that diagnosed with liver biopsy taken from the right spot. Certainly UC medication can induce liver problems but if you are no longer on it then it doesn’t seem likely. The other question is, is your enzyme elevation primarily cholestatic or hepatocellular? Certainly PSC can’t be diagnosed based on liver enzymes but the pattern of elevation does provide some information.
Hi. I read your question. From my understanding, the gold standard for diagnosing PSC is an ERCP. A liver biopsy will show if there is liver damage, how much, etc. my son was diagnosed with PSC in June of 2015. He had a liver biopsy in January of ‘16. His liver is perfect. The surgeon who did the biopsy said that if he was working with any other surgeon, than the one he was working with, he never would have do e the biopsy. My son’s liver looked that good. But he does have PSC. The ERCP proved that. My son was having surgery to be reattached to his j-pouch and while they had him opened up, did the biopsy at the same time. Both surgeons are amazing doctors and I have a lot of faith in both of them. And I don’t trust just anyone! As a side note, the doctor that did the liver biopsy did my gastric by-pass surgery in Sept. 2016. That went well too! Good luck to you, but I would stick with what the ERCP says and not be too concerned about what thenliver biopsy my be saying.
Dianne
In going to most likely get an ERCP in the end. I want to definitively prove it. I did the first of the IPAA surgery March 2017 and my surgeon is pushing for the second to be done in the summer of this year. Atm, I’m trying to avoid unnecessary prednisone since AIH would be the default diagnosis from her if nothing is showing and I really don’t want to be on months of pred since I’ve done that before and its definitely not fun lol.
What is pushing your doctor in the direction of AIH? How are your ALT and AST in relation to ALP and GGT?
An ERCP will give you a more definitive yay or nay for large-duct PSC. A liver biopsy is the only way to definitively diagnose small-duct PSC, AIH, or PSC-AIH overlap. Biopsies are literally a shot in the dark, so sometimes it takes a couple tries to find the right area. Both procedures are invasive with very real risks. Start by getting a second set of eyes on the first biopsy pathology notes.
She’s pushing in that direction if the biopsy comes back inconclusive since the MRCP was clear and the only thing it DID show was that the liver was inflamed. The ducts were fine, liver was a bit inflamed though. Nothing showed the cause of it through the MRCP scan and none of the bloodwork came back positive except IgG.
She also thinks that it might’ve been AIH that was triggered by my UC drugs. Though I never heard Entyvio triggering that and the only drug I heard would, was Remicade and I was off it pretty quickly. (Allergic reaction) Since I’m in the age range of it with an autoimmune disease and had remicade, that’s particularly why. Weirdly, my AST, ALT, and GGT were high (relatively)but not ALP. GGT was 4 times normal and ALT was almost by 3 times and AST was by 10 points. ALP was normal.
Any history of pancreas issues? How long have you had your symptoms? Has your ALP remained normal over time? PSC typically presents with high GGT/ALP and lower values of ALT/AST. ALT/AST tracking near GGT/ALP can be a clue that something else is going on, though this isn’t always the case.
Whether your LFTs and symptoms respond to steroids would provide another clue. PSC typically doesn’t respond to steroids while AIH and PSC-AIH overlap may respond.
I don’t have a history of pancreas issues and it’s been, at least the bloodwork for the high lft, was since September, but the symptoms were all summer long, at least the rashes started then, but the pain was in September. Fatigue was similar.
My Lfts, though, were high in April before the September check but it was a month after surgery. It could’ve gotten better by pred before, but since my LFT was elevated all the time prior to this, it might’ve not been noticed. I did have similar problems but it was always told to me that it was an allergy and i always thought it was the UC since I’ve been on it a ton for 3 years and my immune system reacted to the drugs (5-6 times total)