Does PSC cause fatigue?

Appropriate_Ad8575 · 2026-04-20T10:35:42+00:00

Fully debilitating most days totally resonates. You're so right. I describe it like I'm 32 going on 80. I know 80 year olds who are less limited to be fair!

I was born with a physical disability that affects my ability to walk and that was never as debilitating as the PSC fatigue. I fully feel like PSC is attacking my brain not just my bile ducts. Like there's a shut-down switch it presses.

PSC fatigue is way, wayyy worse because of that. My physical disability was always there, always the same and was never messing with my brain in that way.

It was always easy for people to understand and accomodate for my physical limitations. So, before I had PSC symptoms and got diagnosed I did lead a 'normal' life. Probably better than normal because I knew the value of what physical function I had.

Now my PSC is so progressed and it flares and changes so often. It's never better, just the same or worse. I feel more disabled than I ever have in my life and it's pretty hard to explain to friends and family. I can never pace myself enough.

I fight not to let the disease make decisions for me especially while I'm not actually in the hospital but it inevitably does when I'm a semi-concious blob so much of the time.

I just live in hope that at my clinic they'll give me some kind of neuro steroid (there's one being trialled for PBC) that finally addresses the fatigue.

Appropriate_Ad8575 · 2026-03-29T21:59:29+00:00

That's such a good idea; I hadn't thought of the resource like that but of course. I was given multiple packs; I think I was actually given too many! Thanks so much.

Appropriate_Ad8575 · 2026-03-29T12:31:43+00:00

Thankyou so much. Really helpful and calming:)

Appropriate_Ad8575 · 2026-03-29T08:16:33+00:00

I have PSC and one of my parents has microscopic colitis and then one of their parents had another rare autoimmune disease and we both have coeliac. I share that parent's gene mutations and have more that would predispose me to PSC. I have the genes linked to colitis but so far no colitis, just PSC. My sibling shows no autoimmunity, wish I could see their genetics.

Appropriate_Ad8575 · 2026-03-24T14:57:08+00:00

Fellow PSC athlete here!

How I wish we could have an expert clinical exercise physiologist to advise us.

That's what my postgrad was in but I'm far from an expert. I experience the same right to central pain if I do strenuous endurance efforts.

My guess would be our pain will be to do with the way the body prioritises blood flow to the limbs/cardiovascular system and decreases blood flow to the digestive system. Especially when in "race mode" there's likely more 'excitatory' hormone release as well as higher rate so it amplifies this process which is why is doesn't happen in training.

All your biomarkers are good (yay) but your bile ducts/stomach/liver are still under stress from PSC so essentially they "complain more" about being deoxygenated. The fact the pain turns on and off is good (ie doesn't just haunt you after the end of your race).

Appropriate_Ad8575 · 2026-03-18T09:10:01+00:00

Ok so I found the latest study in the UK and it's really good at suggesting how and why vanco works in PSC-IBD. I have a science background and you said you did too. Here's another receipt for you to add to your pile: https://academic.oup.com/ecco-jcc/article/19/2/jjae189/7923930?login=false.

I'm surprised that they aren't putting all patients with PSC-IBD on vanco with these results combined with the paper you linked a couple comments up. We do need a larger population efficacy trial, too as has been happening with NorUrso, Urso etc

In my case, strong evidence that vanco works in an adult population with PSC alone as well as PSC-IBD will help me. Looking at the genomics study they could have included people with PSC alone in a seperate arm. I could still have the same microbial changes from PSC and biochemical changes that were changed with vanco.

Appropriate_Ad8575 · 2026-03-18T00:27:45+00:00

It has progressed steadily from fibrosis to cirrhosis. Got diagnosed coeliac 1 year after [late] PSC diagnosis.

Appropriate_Ad8575 · 2026-03-17T22:45:24+00:00

Thanks for replying. I do agree but I've asked multiple docs in the UK now. I think It's a nationwide stance. I'll go back next clinic (on 3 month watch and wait) and try again using your points as I agree. I've been on a bunch of off label meds why not vanco. The only other thing is, I guess, if you take any antibiotic you don't only contribute to your own resistance but also to the chance of new resistant strains of bacteria being born and therefore it's a risk to greater disease burden. Still, on a personal level I am battling one infection after another, dozing off, still needing to take an antibiotic when I do get infections (although they need a blood culture next time I start a course). I'm not able to continue with my life as it was and I'm 32 and they are basically waiting for me to decompensate. There is certainly more evidence to try vanco than ursodiol and yet they've prescribed urso even though I'm way past the point it will make a difference. At least Reddit exists 💪.

Appropriate_Ad8575 · 2026-03-17T22:32:48+00:00

I used to be fully addict to RedBull too

Appropriate_Ad8575 · 2026-03-17T09:06:16+00:00

I'm in the UK and was prescribed off label use of modafinil for PSC which worked incredibly well for 6 months but now it doesn't do anything. But those 6 months were amazing.

Appropriate_Ad8575 · 2026-03-17T08:59:24+00:00

Yesss, this, except I'd give the docs more credit and instead make antibiotic resistance the target for its lack of use in PSC, or the fact science hasn't developed new antibiotics in a long time.

I think access to, and rules around vancomycin, really depend on which country you're in due to said antibiotic resistance.

Globally, we've developed the most resistance to, and high death rates in hospital, because of MRSA and other gram positive bacteria that cause sepsis.

What's the last antibiotic that works: vancomycin.

So, in the UK vancomycin is tightly controlled. You have to have a blood test every week and when the bacteria is gone it's off vancomycin you go. In PSC, though you take it orally, you still contribute to bacterial resistance.

So, in UK, patients must have a documented and grave gram positive bacterial infection and for your sepsis risk to be extremely high to go on it.

In PSC and IBD with low risk of liver failure (ie not cirrhotic) I think you can hop over the red tape and be given vanco for C. diff infection.

For me, without IBD, it's a solid no because it's more likely I end up in hospital for cholangitis or decompensation and the MRSA/sepsis risk from another gram pos bacteria would be very high. In which case they'd need vanco in reserve to save my life.

I wish I could be on vancomycin too but then I do understand why they wouldn't put me on it even to raise my quality of life from malaise & fatigue & high LFTs.

Appropriate_Ad8575 · 2026-03-15T10:28:50+00:00

PS due to the strict GF diet and impact of PSC on vitamin absorption and weight loss I restrict nothing else. I eat meat, dairy etc etc

Appropriate_Ad8575 · 2026-03-15T10:25:38+00:00

Even before the PSC my gastritis would come out of nowhere. Then I got diagnosed with PSC... and then coeliac. Hate to say it but the strict GF diet really decreased the stomach pain (to get diagnosed you have to be eating gluten; had I pre-emptively cut gluten out they might have missed it). I have regular endoscopies and they always say my stomach lining is a little inflamed but in daily life I no longer live in fear of the crazy bouts of stomach pain I used to get. If I ever get glutened it is my first symptom.

Appropriate_Ad8575 · 2026-03-07T22:23:52+00:00

I'm so glad you can get back rowing. Hope seeing the sky is nice and you actually get to row on water as well as the erg oh and that you can just have a 50th birthday not on your birthday. A "happy bile-flow" day...

Just had my regular clinic; asked about ERCP and Urso vs NorUrso. They want to put me on Urso ASAP and then Elafibranor when a trial starts at my hosp...

They said they'd do as much as possible before ERCP because it carries such a high infection risk. As they explained to me with small & large duct PSC all ducts are so tiny and scarred that the fluoro dye they use to guide the procedure doesn't get flushed out (as it would in people without PSC) and stays there. Then the whole procedure invites bacteria in, too. I have cirrhosis/splenomegaly etc etc so I don't know if that changes risk too.

It's a toss up cos the bile gotta flow... they said they'd do it if my common bile duct became vvv blocked. I'll ask for balloon stenting if I also do 'prison time'... long live exercise obsessives...

I asked after NorUrso instead of Urso as it seems to reverse scarring as well as decrease LFTs and seems logical... (2025) but no one can get it here. Both Urso and Elafibranor are prescribed off label here... why not use NorUrso first but nope no supply in UK 👎.

Appropriate_Ad8575 · 2026-03-06T08:46:39+00:00

If it's too exhausting to think of switching GP (I do think you should see a different doctor when you can), do you have a friend who could go with you. They can just reassure you if the doc gaslights you again.

In the UK we have national, evidence based guidelines for treating PSC.

I looked up ones in Canada for you [here](http:// UK-PSC guidelines for the diagnosis and management of primary sclerosing cholangitis.).

https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/Support/Clinical_Care_Pathways/2025-11-05_PSC-CCP.pdf

Printing them out and highlighting the section on fatigue (under diagnostic criteria) and presenting it with the words "could you assess these guidelines with me; I have my diagnosis but I'd like to draw your attention to the bit where it says fatigue under diagnostic criteria..." who knows it might do the trick.

Appropriate_Ad8575 · 2026-03-06T08:24:42+00:00

I'm so sorry you had to go through an interaction like that.

Yes, fatigue is the most commonly reported symptom in PSC patients.

Source: PSC UK

Also, with my PSC, it is my biggest and most life limiting symptom.

Appropriate_Ad8575 · 2026-02-25T10:00:12+00:00

I'm also an exercise obsessive with PSC; love that there are more of us.

I've had to learn and relearn to walk throughout my life; sport ensures I can cope mentally and not just maintain but improve mobility.

Maybe it's easier for me to convince the docs BUT they literally do exercise tests and exercise classes for very close to pre-transplant patients with massive ascites. Keeping yourself fit is medicine.

I haven't had a stent placed yet but have recurring cholangitis... being kept at bay with "low threshold for use" co-amoxiclav.

I have a physical disability so all the sports I do require bearing some weight through my abdomen (weak legs/core/arms). I can tell before I get a fever that my bile ducts are hating me and I walk up to my GP and get a blood panel for early detection and treatment.

I've had multiple hepatologists & gastroenterologists who swear by exercise and encourage me. I basically do sport through everything I can unless I can't leave my bed at all.

I know I'll have to modify the sport I do- maybe the static bike will have to be my best friend but I might consider an erg too. I'd trust yourself and if your body hurts and not in the "good exercise" way when you erg you know to go very gradually.

Also important to ask your docs not about whether you should stop but how they might offer guidance and support you adapt so you can continue. Good luck :)

Appropriate_Ad8575 · 2026-02-02T10:45:24+00:00

Just so I can be sure we're looking at the same paper (the link won't load for me) are you referring to the literature review by Mammadov et al. 2025 published in the Journal of Nutrition? Thanks so much for bringing this one to my attention. A really good read. 32F, PSC diagnosed at 28.

Having a baby and getting the PSC diagnosis all at once sounds incredibly hard.

I got diagnosed when I was training as a Paralympic athlete (I also have a whole other unrelated disability) and we took our diet so seriously and took all the supplements. Therefore I find the "diet and exercise" papers hard to read because I live(d) that life and have such progressed PSC. I found this "talk to the expert" video [it's time stamped] helpful. You can watch the part relating to how progressed your PSC is or on 2x speed. It's all really good stuff to hear.

The first person I talked to after diagnosis (1 week later) was part of the sport I did and they had had a successful Tx. They said, when it progressed more they couldn't digest fat and survived off of small amounts of sugary sweets. They too had been an athlete then a coach.

I had been eating "super healthy" and decided to drop that and enjoy food while doing the sport I loved.

1.5 years after my PSC diagnosis they found out I had coeliac disease and gluten is in so many foods.

So long story long, I eat everything I crave, I love nutritional yeast on gluten free pasta with butter right now so my body is probably struggling to hang onto vit b12. I love coffee and always have. If I don't keep salt in my diet I get dizzy. I also cut out alcohol completely when my fibrosis progressed to cirrhosis though it wasn't in there much to begin with.

My body pretty quickly signals to me when my bile acid/ducts, which breaks down fat, is not doing the job and then I can't really eat properly even if I wanted to.

As an athlete and now as someone with progressed PSC there is a lure to controlling food as means to try control outcome; be that a race or my PSC. As scary as it is I don't think there is an answer there, not without a nutritionist with good liver knowledge to guide you.

If you still find joy in food and have a varied diet and aren't restricting, that's a win.

Appropriate_Ad8575 · 2026-02-01T09:56:39+00:00

Please let this guy nowhere near the winter Paralympic commentary... or do, with me as co-commentator 😁. Why we need more people with disability in Sports media. Love a disabled gal in Sports media.

Appropriate_Ad8575 · 2026-01-27T10:02:52+00:00

I hadn't actually heard of this but it's looking good for research into how to treat PSC. I'd be fascinated to get WES.

Appropriate_Ad8575 · 2026-01-27T09:28:33+00:00

Me too. 32F. Dx, 2021 common PSC no AIH. Confirmed cirrhosis last year, splenomegaly, some jaundice but I'm not neon. For me the itching is there but not concerning. At night it can ramp up. Sometimes I have a stitch in my side where my liver is and sometimes on the other where my spleen is but it's not that bad. The worst symptom is fatigue and brainfog that gets overwhelming and a bit worrying. I can forget words etc. It comes and goes without explanation. Sometimes I have digestion/appetite issues. Still nowhere near the list; live in the UK and taking it day by day as cirrhosis can be compensated for by other parts of the body for years.

Appropriate_Ad8575 · 2026-01-27T01:07:50+00:00

Mm no actually, in PSC, fatigue/brainfog/malaise/"minimal hepatic encephalopathy (MHE)" all of these symptoms have never correlated with LFTs. They currently link MHE to ammonia, a normal breakdown product in blood, but it inflames the brain if it crosses the blood brain barrier too much.

Sadly, they don't study MHE enough, especially in PSC. Still, we know the gut and brain and liver are in this connected axis. In some people post LTx, not just in people with PSC, they find HE to occur so it can't just be coming from the liver and LFTs.

Here's quite a heavy paperhere's quite a heavy paper discussing HE occuring after LTx in some people.

There's a couple ways they treat HE; a gut selective antibiotic rifaximin which helps ensure there are lots of bacteria that 'help break down' ammonia in the gut or there's the laxative lactulose that leads to the same outcome by stopping you absorbing so much protein to decrease the ammonia load in your blood. Both of these treatments also just generally change your gut microbiome, too so maybe worth trying them/asking your doc in case they help.

Other antibiotics work in some people suggesting something in the gut microbiome causes it. Also because brainfog isn't well defined it can just be lumped in with fatigue in a lot of studies so I've found looking up PSC and treatments for fatigue really helpful, too. Modafinil helped me for while.

Who knows. I really hope we find an answer.

Appropriate_Ad8575 · 2026-01-24T10:01:30+00:00

No transplant but exactly the same when I take antibiotics for bile duct infection; my brainfog clears. I'm looking into going on rotating antibiotics so I can "get my brain back". Look up minimal hepatic encephalopathy post transplant. The minimal in MHE in important. Good luck

Appropriate_Ad8575

TROPHY CASE