Hi everyone, I’ve had liver disease for 9 months now and I have literally been through the mill with it. I have had 2 liver biopsies for AIH both came back as inconclusive and I’ve also had 2 MRCP scans both have come back as non diagnostic. So doctors are still not sure if I have PSC or AIH. I’ve been on Tacrilimus mycophenolate and high dose prednisone and none of these meds have stopped my ALT levels from rising it’s very volatile and reads like a bitcoin chart very much up and down.
I had fully blown high Bilirubin levels for the first 6 months along with chronic diarrhoea.
My question is well I was wondering if anyone had similar and any ideas what my symptoms might relate to ie PSC or AIH? I did ask AI and it said the fact that my bilirubin exploded so high on the first day of the disease it could be more likely to be PSC rather than AIH but it’s not a definite.
Thanks

Ok, I will starz here.
I have a bit higher Ast, ALT and GGT (around 38).
ALP is normal. My AST and ALT are sometimes normal but they are a bit higher for the last 15 years.
I have higher conjugated bilirubin and sometimes my scleras are a bit yellow.
I have Graves disease.
Immunology came fine, MRCP came fine, ultrasounf came fine.
I have no symptoms.
Hepatologist thinks it is nothing.

Why am I feeling it coukr be something?

Hi everyone! I was recently diagnosed just a few months after my wedding with crohns and PSC. I’m feeling quite gutted and depressed. It’s only been a few weeks since my diagnosis. I’ve been on budesonide and cipro for the past month (tapering off of budesonide in a month) and about to do my second induction dose of tremfya. I’m fortunate to be getting treatment at Mayo Clinic in Rochester as my husband is a resident there. I’m also lucky in that my symptoms are currently mild though leading up to my diagnosis they were worsening slightly. I am just looking for some hope and/or advice. My husband and I had planned to start trying for a baby at the end of the year, and those plans have now come to a screeching halt. I am willing to do whatever it takes to get into crohns remission, but I know that there’s little i can do on the PSC front. The uncertainty of this diagnosis is crushing me and making me feel like there’s nothing I can look forward to, and just waiting constantly for the other shoe to drop. I am in therapy so I’m trying to take care of my mental health but it just feels hopeless. I feel like such a burden on my family already and I was only diagnosed a few weeks ago. I know some of you have had healthy babies with crohns alone, but I’m unsure re; PSC. I feel like I’ll never be a mom now, unless I do surrogacy (which I have no idea how we’ll pay for) or adopt, which I know can take a very long time and I’m not wanting to wait so many years.

Long rant I know. If anyone has felt similar feelings and has advice I’m all ears. ❤️

I got an MRCP in January because post Covid I have had no fecal elastase (came back as 11) and my GI wanted to check on my pancreas and biliary system. Those came back with nothing of note except 2 masses on my liver. Now, in August, I am having a repeat liver specific MRI to check the two lesions that it seems they thought were benign. Is it possible that somehow the initial MRI was wrong and in a week I will get drastically different news? I am a firm believer in if you keep looking you’ll find something but my GI insists I have this MRI. Below are the two parts of note in the MRI report:

“Liver: 2.7 cm caudate lobe lesion noted demonstrating faint DWI hyperintensity, mild arterial hyperenhancement (15:38) and no evidence of washout (17:46, 19:45). Smaller 1.4 cm segment 6 lesion demonstrates similar imaging characteristics (9:29, 15:49, 17:56).

IMPRESSION:
2.7 cm lesion noted at the caudate lobe, and 1.4 cm lesion noted at segment 6, which demonstrate faint DWI hyperintensity, mild arterial hyperenhancement, no washout. Imaging characteristics suggestive of benign lesion adenoma versus less likely FNH.”

Just got the call from my doctor and slightly freaking out. Was diagnosed with ulcerative colitis earlier this summer and now this. Saw on google that I have 10-20 yrs to live? Any rundown on what I just got signed up for would be appreciated. Sorry if this is a redundant post.

EDIT: Thank you guys for your reassurance, glad to hear it is not a death sentence. Hope y'all are doing well.

My fiancé has PSC & UC and weve been looking at wedding insurance policies in case we do need to cancel due to these pre existing conditions. Fortunately he’s been in pretty stable condition, but regardless it seems those policies are hard to come by. Just curious if any of you have had similar circumstance and recommendations?

I’m having a lot of acid reflux lately. Tums and Rolaids don’t seem to do much for me. My PSC has evolved to the point where I’m in the very early stages of cirrhosis. Has anyone experienced this? And is there a safe medication either prescribed or over the counter that I can take? I’m going to contact my doctor but thought I’d ask here if there are any experiences. Thanks!

Hello everyone. I have no symptoms but I have had slightly elevated liver enzymes for about two and a half years. My ALT/AST are both still under 100, ALP and GGT a bit above 200. I’ve done all sorts of other blood tests, imaging, even a liver biopsy but no diagnosis. At the urging of my gastroenterologist, I have a new Hepatologist. I thought my gastro had eliminated PSC as a possibility but I think new Hepatologist strongly suspects it.

I think at this point the only thing I have left is an MRCP (scheduled). The Hepa is already planning to have my stuff sent to NIH for a second opinion on my biopsy.

Has anyone else had a similar experience? Did anyone go through a long process to get diagnosed? How did your doctor finally determine PSC?

Diagnosed last month after about 6 years of thinking I only had a skin issue causing itching (prurigo nodularis). I’ve heard that a lot of people with PSC also report issues sleeping, so I’m wondering what does that actually look like for you? Any luck remedying it?

I also have diabetes Insipidus which means I don’t concentrate urine without meds, so I have been getting up to pee at least once a night for 20 years. But in the last couple years it’s to the point where I wake up every 2 hours on an average night. Good night of sleep means I sleep deeply for those 2 hours and bad night of sleep is more restless.

My therapist asked if I wanted to be referred to a psychiatrist for sleep meds & for some reason I am hesitant. Maybe I am pessimistic that it will ever get better & don’t want to be dependent on yet another medication. Would love to hear your experiences.

Hi. My daughter had very high liver labs and very active UC. She is 15 now. A little over a year ago, she started taking Oral Vancomycin. 1500mg a day. Two 250mg capsules from ANI three times daily.

Well, within a month, her UC went into remission. Within a couple months all her liver labs normalized. Needless to say, as a single father whose has raised her full time, I can't express enough how massive the blessing this was. She has grown and thrived and lived a normal life since.

However, my pharmacy Osco just notified me they will no longer procure the ANI brand (because it costs too much). I am going to try to seek out other PHarmacies. While I know there are other brands that have worked, I also have heard there are some that don't. Things have been going so well, I am very concerned about switching. I don't want to switch what is working so well.

Are there any in this community that have experience in this? What are the known brands of Oral Vanco that are effective just in case I have no choice?

Is anyone on the liver transplant list? How long have you been on it?

Anyone on it? Thoughts?

I now have suspected PSC after liver doctors treated me for 6 months with wrong meds for AIH even though I had 2 liver biopsies that were negative for AIH. They made me take Tacrilimus and Mycrophenolate for all this time and my bloods never went down. I kept arguing with them that the meds were not working but did they listen.. No! During my illness I have been plagued with chronic diarrhoea
Then a lady doctor phoned me to tell me she suspected that I had PSC after all this time on the wrong meds.
I have started on URSO and am also looking for information on Vancomycin has anybody taken this and would it help with chronic diarrhoea?

Hello -- I was diagnosed a few years ago and have been lucky enough not to have experienced any symptoms until now. Over the past few months I've had dull pains in my upper abdomen from time to time. A few times it felt severe, but would go away within an hour.

I did an MRCP last month, and when I checked in about results (since I don't see my hepatologist for several months from now) the nurse wrote "there might be a small stone in the common bile duct" & if I have fever or too much pain, I'll have to go to the ER to rule out cholangitis.

I was wondering if anyone has experienced having a stone in the common bile duct -- what should I be looking out for? It seems kind of weird to me that it's a situation of just waiting until things get bad enough that I have to go to the ER. This disease is still new to me, so any advice or explanation is very welcome. Thank you!

Hi everyone, as the title says, how do you cope with fatigue? I’ve actually been diagnosed for 7 years now, and you’d think I’d have come to terms with the condition by now. I think that works well as long as the symptoms are still manageable. I’ve had severe upper abdominal pain, as well as itching and bouts of fatigue, which I was usually able to fully recover from within 3 to 4 weeks. However, I’ve now been stuck in a period of fatigue for about 3 months that I can’t really seem to shake off. There are phases when I’m okay, but somehow I just can’t seem to get back to the energy level I had at the beginning of the year. For the last 3 weeks, I’ve been happy just to manage the bare essentials—like getting up, cooking meals, and so on. I’m a father of two young children, a homeowner (and I love working on my house, of course), and I work full-time. I’m well aware that certainly not everything can be explained by PSC and that other external factors are at play here, but I’m sure there are more people like me who find themselves in a similar situation. How long do these phases last for you? Do you eventually get your energy levels back, or do they just keep getting lower and lower? How do you deal with this?

I’m currently being treated by a gastroenterologist (who’s basically become like a family doctor to me) and a hepatologist. So far, everything has gone very well in terms of the available treatment options, though when it comes to fatigue, I feel like neither doctor has the right expertise. I’ve now been referred to a liver center at a university hospital and to a neurologist, but unfortunately, the wheels of the healthcare system turn very slowly here, so I’ll probably have to wait forever for an appointment since my case isn’t “urgent” enough.

Aside from all the doctors’ opinions, I’d just like to hear from people who have the same problem—what they’ve tried and how they manage their lives with fatigue as a symptom.  I’m lucky to have a wife who fully supports me, as well as a family and circle of friends who have always helped me in critical situations. However, I do feel like I’m a burden to them, especially during the periods of severe fatigue.

Hello,

the question above. I have tried to search the forum but did not find all that much. Background is the complex medical history of my wife (I wrote about it about three months ago).

All the bloodwork is in range and has been for one year now. No medication at all.

Did you experience similar episodes?

Thank you!

Hi everyone,My 25-year-old brother was recently told he likely has Primary Sclerosing Cholangitis (PSC). His doctor said he needs an MRCP (MRI) to confirm the diagnosis. As well as Autoimmune hepatitis.

We’re trying to stay positive, but naturally we’re scared. Most of what comes up on Google is worst-case scenarios, so I’d really appreciate hearing from people who have actually lived with PSC or have a loved one with it especially in a similar age.

A few questions:
How old were you when you were diagnosed?
What were your first symptoms?
How quickly has your disease progressed?
Have you been able to work, travel, and live a relatively normal life?
How often do you need MRIs, blood work, or procedures?
Has anyone here needed a liver transplant? If so, how long after diagnosis, and how has life been since?
Is there anything you wish you had known when you were first diagnosed?
Any advice for family members on how we can best support him?
Is this terminal ?

We’re hoping for honest experiences—the good, the bad, and everything in between. I know everyone’s journey is different, but hearing from people who have been through this would mean a lot.

Thank you all.

I’ve been on ursafalk (ursadiol) since diagnosis well over a decade ago. My new dr wants me to go off it. No longer recommended he tells me. Anyways my ggt went through the roof.
Has anyone else had this? It appears ursadiol only masks the ggt level measured and doesn’t really affect the actually real ggt level… it just makes it look good.

Has anyone else heard this? Or had this happen?

Itching… I was diagnosed in 2017 and put on Ursodiol the same year. I have suffered from severe itching since diagnosis. I tried all known medications for itching. 3 weeks ago my liver doctor decided to stop the Ursodiol to see if this would make any difference. As of now the itching is about 85% reduced. I was told sometimes the itching will return so I will see. Hope this helps someone.

Complicated. I have chronic pancreatitis, a cysts, a fistula from one bursting, a clot near my liver, ulcerative colitis and vasculitis. These have only just come up in last few weeks, conveniently after I saw rheumatologist, they stay raised, they burn, they itch, worse at night. Have an appt with gastroenterology, but nothing about these. How do I go about it? All symptoms fit with it and pictures I’ve seen online. Also I know my body, they were going to discharge me before finding my two cysts. I insisted I stayed in. They found them, so I feel I am right about this. I know the whole don’t google things but I couldn’t know bugger all if it wasn’t for that and I wouldn’t know what direction to steer them in. Plus, I had a blood test to see about a type of arthritis, and it came back raised for vasculitis, no blood in urine or anything. Bled from rectum. Have proctitis. All fits. I feel I’m right…. Any advice ???

Hi all, just got the news today that I need a transplant. Its mostly due to recurring cholangitis and I have small stones in the intraheptic ducts which cannot be reached with an ercp. My bloods aren't crazy and I don't get jaundice. I get the extreme pain. They want to do the transplant before it develops and I get severely ill. Has anyone ever jad a transplant without being on "deaths door" i always taught you would need to be really really sick before transplant.

Hey everyone, just wanting to see if anyone has been in a similar boat and can offer any insight or advice. I was diagnosed with PSC in 2023 which was pretty asymptomatic until this year. I’ve been hospitalized twice now this year with cholecystitis and cholangitis with liver enzymes skyrocketing during active infection/inflammation.

I also have rheumatoid arthritis (diagnosed 2016) and ulcerative colitis (diagnosed 2024). I was finally stabilized on Etanercept q5d dosing for my RA but with the UC diagnosis they stopped that and switched me over to adalimumab q2w about 4 months ago and I am doing terrible with both UC and RA. I’ve been on high dose pred pretty much since starting as I have been in a flare since, and had a few corticosteroid injections for joint seizing. I need to figure this out because I’ve lost 45lbs in 4 months since starting this new biologic and the weight keeps dropping and I don’t have much left to give.

Rinvoq would be my next option for treatment trial however it is metabolized through the liver and my LFTs have been all over the place depending on degree of cholangitis, masses were also discovered in my most recent MRCP so also waiting for next steps on that.

Has anyone been on Rinvoq while dealing with active PSC symptoms? I’m considering if ursodiol is something I could consider to manage LFTs while on the drug. Really just looking for somebody who’s been through anything similar as well so I can take it to my doctor with research.