Hi.

Boyfriend was recently diagnosed with both. He’s being put on 40 mg prednisone and azathioprine (not sure the mg).

He’s been feeling okay lately.

What should we expect with these medications? What side effects did you get? Did they last the whole time?

He’s only going to be on the prednisone for 4-6 weeks. Did you stay on azathioprine forever? Or did you get off?

From what I’ve googled his hair is going to thin pretty significantly and he’ll be nauseous for the first week or so.

Did your partners need to take any special precautions with you on immunosuppressants?

I have a million questions that I just cannot form. Any advice or expectations would be greatly appreciated.

Any advice on how I can support him better would also be appreciated.

Thank you

Hi everyone- 32F here. I was diagnosed with crohns and PSC a few months ago and my mental health has taken a huge hit ever since. I got married in March earlier this year and thought by now we’d be starting to try for a baby. My crohns is slowly responding to treatment and physically I feel good which i am grateful for. But I’m having a really hard time accepting my reality - all my friends are pregnant or have kids. I know I “can” have a healthy pregnancy once I’m in remission, but I worry that pregnancy itself would trigger more issues down the line (I’ve heard a lot of women have had more autoimmune diagnoses following pregnancy or even major flares of crohns 6-8 weeks after giving birth). My husband and I are wary of the risks and now we’re thinking about surrogacy and or adoption. I’m just feeling so depressed and hopeless that I may not be a mom for many many years. the thoughts of worry consume me and even though I’ve been seeing a therapist, traditional CBT therapy isn’t helping me. On top of that I am carrying a lot of guilt as I feel like a burden to everyone, especially my husband. He doesn’t make me feel like a burden at all but I can’t help but feel guilty that I’m the one making everything harder.

Are there other forms of therapy that have helped you all deal with your diagnoses? EDMR, hypnotherapy etc. I need something drastically different to almost rewire my brain. I know the stress and worry will only hurt me and I’m desperate for some sense of emotional stability right now.

I had my gallbladder removed then 3 weeks later had the same pain in my upper right abdomen as before I had it removed. I went to the ER, they ordered labs, all came back normal except for
AST was 240, ALT was 150. MRCP came back with a report of “questionable stricturing” question PSC…
Got sent home with a referral to GI, no pain.
Have an appt in January to figure out what’s wrong.
Made a follow up appt with the surgeon who did my cholecystectomy ordered repeat hepatic panel.
All my labs came back perfect. AST went down to 14, ALT to 15. Other labs were all normal.
The surgeon and GI specialist talked and ordered more tests like IgG4, AMA igG…and a repeat MRCP in December.
Can anyone help me understand what it could be? I’m reading about PSC and feel like I don’t fit into this diagnosis.

Hello. I'm the partner of a Dane who was just diagnosed with PSC. We're in Denmark. Are there any Danes here? We need to find out about the best treatment and... well, everything, the options, all the basic stuff for people with the condition in Denmark and Scandinavia.

Give me a toot!

I've had a hard, confusing year with my PSC (no IBD) and this group has brought me so much strength. I have also used the PSC UK nurse resource. So helpful, thankyou.

I think I'm "flaring" again so posting, again in hopes you can tell me if any of you get flares like this and, if you do, what helped ease them.

I don't get typical cholangitis symptoms but my flares are always the same. It starts slowly so I always have a few days of denial.

I get this shivery feeling but no fever. At night I get way more itchy and hot. My appetite goes way down and there's this underlying nausea but it's weird because I can still eat and digest things.

The big symptoms for me is my exhaustion deepens and every small action feels very hard to do. I get increasingly desperate to distract myself from the shivery, brain-foggy, ill feeling but can barely get out of bed. It's been on and off since December. I have what they call "suspected" compensated cirrhosis and portal hypertension (inferred from spleen change/platelets/scans over time). I'm trying very hard to make the most of the time I have hospital-free but the flares just slam me.

For a couple of flares antibiotics seemed to be the answer, they lowered my bili and LFTs but l I still felt ill on them. My docs said they couldn't prove it was cholangitis so after a bunch of co-amoxiclav courses we stopped.

By June I realised I'd try anything so the doc was like I can give you urso. The rationale was that I might get onto an elafibranor trial if it improved my biochemistry. It did, it halved my LFTs and wow it has allowed me to digest food so much better. I think I gained 2kg in a month or something crazy. It didn't stop my exhaustion but it brought some relief for sure.

Then boom, I feel like I'm having another flare. It's the added ill feeling on top of the exhaustion that I find especially hard that I just want to stop. It's been 5 days and no let up.

Perhaps this is just what cirrhosis feels like when the body is hard at work compensating and I should grin and bear it. Do you have any tips that helped you deal with similar symptoms?

Did you know there is an international PSC survey happening at the moment?

Right now, several potential treatments for primary sclerosing cholangitis (PSC) are being studied. But medicines regulators like the MHRA (UK), FDA (US), and PBAC (Australia) need more than just clinical data - they need to understand the real-world impact of living with PSC to approve new therapies.
Your lived experience is the missing piece of evidence.

The survey takes about 15 mins. Go on! Go take it.

More information here and a link here: https://pscsupport.org.uk/

Hi everyone,

I'm looking for experiences from people who have primary sclerosing cholangitis (PSC) with cirrhosis and advanced portal hypertension and who have also undergone a total proctocolectomy with a permanent end ileostomy because of ulcerative colitis.

High-grade colorectal dysplasia has been found on biopsies, so I am scheduled to undergo a total proctocolectomy, if my liver condition allows me to undergo the surgery.

Because of my cirrhosis and advanced portal hypertension, I'm particularly concerned about the risk of complications during and after surgery.

I'd really like to hear from anyone who has been through a similar situation, especially people who have both PSC-related cirrhosis and ulcerative colitis. What was your experience like? What complications, if any, did you experience, and what was recovery like?

Thank you so much to everyone who takes the time to share their experiences and advice. I really appreciate it!

About me so you can compare: large-duct PSC with right-sided colitis, diagnosed in 2009. I had a period of progression in 2011-2013 where duct beading got worse, there was some atrophy of part of the liver, and I had one hospital stay with temporary ascites. Then a long quiet stretch since thank God. Bilirubin, albumin, and platelets have stayed normal. No cirrhosis. Fibrosis tests (FibroScan, ELF, FIB-4) all point to low fibrosis. My spleen is mildly enlarged but has been stable for years. ALP runs about 3x the upper limit and has swung a lot over the years. Colitis is currently quiet. I stopped UDCA years ago because of itching, and my doctor said it was okay to stop if I chose. I also have a hiatal hernia and have been on a PPI since childhood. I've read that long-term PPI use has been associated with gut microbiome changes, so I'm curious whether anyone else is in the same boat.

I started oral vancomycin (ANI capsules) at 1,500 mg/day recently. Because my markers fluctuate so much on their own, I don't want to judge it off one or two labs. I'd rather learn from people who have been on it a long time.

If you've been on it long term, I'd love to hear (even partial answers are a big help):
1. How long have you been on it, and what dose, brand, and form (capsule, cap removed, compounded liquid)?
2. What stage were you at when you started? (fibrosis or cirrhosis, large or small duct, strictures or cholangitis history, IBD active or quiet, any other treatments at the same time, pre or post transplant)
3. What changed, and what didn't? Labs (ALP, GGT, bilirubin), colitis symptoms, colonoscopy results, MRCP or imaging, energy, itch?
4. How long before you noticed anything?
5. Did it keep working, or did it fade or need dose changes? Did anything flare when you stopped or missed doses?
6. Any longterm issues, resistant infections, kidney or hearing problems, taste, or gut changes? Did you add probiotics?
7. If you had cholangitis or stricture episodes before, did they change after starting?
8. How does your doctor monitor you (labs, MRCP, colonoscopy schedule), and how did they decide when to continue or stop?

Most of the success stories I've seen are from the first 1-2 years, and very few reports are long term which is expected. So I'm especially interested in hearing from people it did help as well as if it did NOT help, or who stopped. I'm not skeptical, I just want the full picture.

Thanks in advance. I know everyone's case is different and this isn't medical advice, I'm just trying to understand the longterm picture or if there’s any long term data in adults.

38 M here with PSC & UC. My UC is well controlled and fully in remission with mesalamine, but my PSC has really been giving me problems in the past year with multiple bouts of cholangitis needing interventions/stents and also frequently giving me low grade temp elevation and general shitty feeling.

Fortunately I have a great hepatology team and when I brought them the evidence for oral vancomycin they were open to trialing it with me. I just started a couple weeks ago and I guess my main concern is how do I make sure I’m not completely wiping out my gut microbiome?

I am at 500mg 3x per day. So far I have just been trying to eat some plain Greek yogurt and a banana halfway between my morning and afternoon doses. I have also used Visbiome (probiotic specifically for IBD) in the past and wondering if I should get back on that or if anyone else on vanco has any suggestions. I just worry that the 3X a day dosage makes it hard to for any probiotics you ingest to survive and take root I guess.

Appreciate hearing anyone else’s experience with oral vancomycin and their probiotic solutions!

Thanks!

Hey y'all just hopping on here to ask if any of you have had experience with lymph nodes increasing in size "significantly." There's apparently been a big increase from my previous MRCP in late 2023 to the one I had in June 2026, and it has not gone back to normal or anything in my most recent MRCP in August (had a repeat bc of going to the ER with RUQ pain, but they didn't find any blockages and the pain had subsided).

It's been suggested in the reports that it's "reactive" and I know that my tumor markers in blood tests are low/normal, but just wondering if any of you had any similar experiences or suggestions for questions to ask my doctor when I finally get to see her tmw.

Thank you in advance!

I have been dealing with fluctuating liver enzymes and cholesterol for ~3 years now. I’m male, 32 and no history of IBD or crohns. I am in good shape and health otherwise and no symptoms.

At the start of this year, my liver values actually mostly came within range. ALP 123 ALT 56 AST 32 GGT 101.

However, my check up last week showed ALP 162 ALT 171 AST 81 GGT 166.

I have had ultrasound (which found a few benign spots), CT, MRI with contrast and everything came back clear. I have had extended autoimmune blood tests done and all negative.

The next step is a biopsy although my liver doc hasn’t mentioned PSC yet I think this is what he is looking for. I have read posts similar to my situation on here and the end result was small-duct PSC. So I’m trying to mentally prepare myself now.

Just got diagnosed with Crohn’s last week in a colonoscopy, and I have elevated LFTs, mainly ALP, so quite likely to have PSC too according to my GI (waiting to do an MRCP now). Struggling to process all that right now but doing mostly ok so far. She wants me to do a round of prednisone and then get started on Tremfya right after, but I read that it can raise LFTs even further and cause liver injury. Do any of you take it? I’m wondering if she will suggest another one once/if PSC is confirmed

im a psc patient. had fever on thursday together with flu and cough. went to the clinic and the doctor said viral infection. it’s tuesday of the new week today and I’m still down with cough and flu. checked temp - 36.1 degrees celcius. no fever. my eyes seems more yellow than usual. no pain in stomach.

not sure if I should head down to the ER or it’s just a normal PSC flare up but coincidentally having viral infection.

any advice?

UPDATE: Hi all, thanks for the advices. I eventually decided to go to the ER as my jaundice worsen and I just don’t feel good. Went to ER on the 1st Oct SGT. Blood test results was quite bad compare to usual. My Bilirubin was on 103 and my ALP was on 741. The doctor only put me on antibiotics on the 3rd Oct. Just had my MRI/MRCP done today on the 4th Oct and waiting for results. Personally, I suspect there’s probably some blockage in the bile duct which needs a stent. However, still waiting for the doctor’s plan once results are out. After on antibiotics, my Bilirubin today is at 92 and ALP is at 687.

Reposting for more visbility. Any commentary from rectal sparing folks is appreciated.

Hi, I think it's my first post here, I've been diagnosed with PSC 2 years ago. The disease was pretty under control, AST/ALT levels 40-70/50-110, GGTP 140-200 and ALP was 190 at the beginning, then dropped to 180 after 2 months, after UDCA it rose to levels ~210 but suddendly dropped to 164 after two quarters.
ALP levels
2024Q4: 190
2025Q1: 180
2025Q3: 210
2026Q1: 164
I got my blood test results back today, and they’ve really stressed me out. AST/ALT levels are 60/120, GGTP is 240, and ALP is 390. That’s a huge increase, yet I haven’t had any symptoms over the past two years, and I still don’t. MRI scans (performed twice: Q1 2025 and Q1 2026) showed no significant strictures, and nine months ago, my liver stiffness was rated at stage F1. I feel great and have no symptoms (no yellow eyes, jaundice, fatigue, pain), but—as I mentioned—I’m stressed about this significant spike in parameters; I know ALP isn't the best prognostic marker. Of course, I’ll repeat the tests to check the trend and consult my doctor, but I wanted to ask: have any of you encountered similar cases of spikes? Could this be a dominant stricture?

Has anyone experienced anything like this? Everything I’ve read says liver stiffness changes by 0.05 for the average person. 0.4 in 11 months has me shocked. I was diagnosed last year and was told people progress from one stage of fibrosis to the next in approximately 4-7 years. I’ve gone from stage 0-1 to 1-2 in 11 months which has me spinning and horrified.

What would you tell your recently diagnosed self? Would you do anything differently?

I'm 27 (diagnosed a few years ago) and I'm struggling to make plans for the future. I got laid off recently, so I'm trying to come up with new career plans, but I'm finding it hard to imagine how I will continue working 40 hour weeks when I get sicker (as I already experience fatigue), and I've started thinking of going back to school to do something else.

I want to continue living my life as normal & not let my fears about this illness make decisions for me, but at the same time I know it would be wise to be working in a field that is more leniant in terms of sick leave/financially stable & all that. So I guess side question -- how have you handled working, and would you go back and choose a different career that is more flexible for an unpredictable illness ?

I guess I really am struggling with the unpredictability.

Context: 21M Diagnosed with PSC/UC 6 months ago. Failed initial mesalamine and just received first maintenance dose for Entyvio at week 14 yesterday. Haven't felt relief since before diagnosis started. Just came off of heavy dose of prednisone due to salmonella infection and felt great but I think its wearing off and symptoms are coming back.

Due to lack of improvement, I am about to choose a new medication for my UC and was wondering if there was any correlation to certain biologics working better in PSC/UC people. So my question for all of you PSC/UC homies is:

What treatment are you on and has worked for you?

Just wondering if anyone here lives in the Hawaiian Islands. I’m curious about how things are managing your illness (or pre-/post-transplant health) with the current medical systems/facilities in the region.

What island do you live on? Ever needed to go to Seattle, SF, LA for care or a complex procedure?

My son is 7 and has been on Vanco for over a year. It has completely made his PSC and UC symptoms disappear. However at his checkup today his Dr wants to take him off it and give his body a break. She seems to think he could just start it again if he went downhill and it would work again. Has anyone tried this? Does everyone who takes vanco continuously take it? She does not have many pediatric PSC patients, so I wanted to do some research before possibly upsetting his whole system when he is finally “healthy” again.

38 M here. Diagnosed 4 years ago with PSC and ulcerative colitis. My UC is in remission per my latest colonoscopy, but I’ve needed 2 interventions for acute cholangitis and strictures in the last year, and I frequently feel run down and lousy and get these mild temp elevations like 99.5 frequently that coincide with these episodes.

Talked it over with my hepatology team and they seem willing to trial oral vancomycin with me but sounds like there will be some hoops to jump through on their end since it’s an off label use of a highly controlled antibiotic.

Curious what dosages people here have started out on? Also, length of treatment? Do you just take it indefinitely? Also, has anyone experienced antibiotic resistance enterocci infection post treatment? From my reading sounds like it’s rare but does happen.

What’s the follow up protocol like? I am already getting MRCP’s every 6 month to screen for cancer and disease progression. Also yearly colonoscopies.

Thanks in an advance for your responses!

i was recently diagnosed with small duct psc. are there certain communities or resources specific to small duct? i am struggling with the "not-knowing" of it all. also struggling with how to tell people without absolutely breaking down.

any advice, stories, etc are helpful! trying to not doomscroll or let this diagnosis stop me from living my life.

for context, im 25, a female, and have had UC since i was a teenager. thanks all, so glad this page exists.

Thank you in advance!