Sorry, I meant I haven’t had them since as a group of symptoms all hitting me at once with some severity that took me to hospital - and I forgot to mention the Ibd! The main thing that has persisted is the fatigue and also a general feeling of being unwell like I have a constant bad cold.
Yes, I had an mrcp which didn’t show up anything. I also had a fibriscan which came back normal.
My lfts are all still elevated. Bilirubin is normal and I have never experienced any itching from the psc. My lfts did all normalise about a year after diagnosis and while they have crept up, they are no where near what they were when I had the episode that took me to hospital.
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Oh! I was holding out hope for you that maybe you don’t have this terrible disease after all! But, it sounds like whatever it is, even if it’s not PSC, is just as bad. 
Yes to IBD, however, I have found changing my diet to whole foods has helped. The Forks Over Knives documentary and the China Study book changed my life. Although, I thought I could reverse what was happening to me, like so many others, but no such luck.
And, yes, the new “normal” is feeling so tired all the time. That’s really the hardest part for me. Seeing things that need to be done around the house, but no energy to accomplish anything. It really bums me out.
But, I guess the takeaway from this conversation is, even though we’ve been feeling bad, we’ve certainly felt worse! We can only do the best we can every day. Focus on now, because now is all we really have!
Have a great day! 
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Hello,
I am curious to know how you have changed your diet? Im looking to change my diet to help me with fatigue etc but not sure where to start. I try to eat mostly salads and steamed vegetables and fruits. I read somewhere that our liver cant process fats from animals very well so I cut down on my meat intake , but my protein went down, so I started eating eggs and protein bars. Im just curious to know what your diet consists of, or if you take any supplements? do you drink coffee? what do you feel helps the most?
Hi @Vasni! No wonder you’re tired! I’ve spent what seems like a full-time job researching nutrition. I know there’s a whole discussion on another page, so I don’t want to go into too much here, but I’ve used PCRM as a resource. They have a whole kickstart meal plan for free here. One of the big things I’ve learned from them, when you make a “salad” is to add a whole grain like wheat berries or quinoa and a legume like lentils or beans. This really fills you up, and the protein! Wow!
I’ve also signed up to receive Forks Over Knives meal plans and have also used their free recipes here. I’ve watched the Forks Over Knives documentary on Netflix, which also led me to a slew of others, but then I had to research those sources to be sure I wasn’t being led astray.
So, I read, The China Study: Revised and Expanded Edition: The Most Comprehensive Study of Nutrition Ever Conducted and the Startling Implications for Diet, Weight Loss, and Long-Term HealthDec 27, 2016
by T. Colin Campbell and Thomas M. Campbell II.
I read, The Cheese Trap: How Breaking a Surprising Addiction Will Help You Lose Weight, Gain Energy, and Get HealthyFeb 28, 2017
by Neal D Barnard and Marilu Henner.
I read, The Starch Solution: Eat the Foods You Love, Regain Your Health, and Lose the Weight for Good! Kindle Edition
by John McDougall (Author), Mary McDougall (Author).
And, much, much more, but these were a great start.
I’m happy to discuss more and help in any way I can. I am still symptomatic but I believe my symptoms are lessened by being kind to my body, especially my liver by choosing whole foods and no oils or unnecessary fats. I get my fats from nuts, nut butters and seeds. And I limit the chemicals in my diet by eating mostly only things I make. It’s pretty easy and cheap once you get the hang of it. 
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Hi,
Just providing an update around my lessened symptoms. I have small duct psc and for years I have had major fatigue, unsteadiness/dizziness, eczema that started with the small duct psc and serious brain fog, also sometimes problems forming words, and occasionally having problems with my swallow reflex. My urine was always a touch on the dark side too. Through trial and error over the last 2-3 years I have worked out that gluten and caffeine are my two enemies. I am not diagnosed with celiac even though I was tested. I realised caffeine was a problem about 2 years ago and cut it out. About 3 months ago I cut out all gluten. All my symptoms listed above are gone! I assume I still have small duct psc but now I am symptom free. Cutting caffeine and gluten was never suggested to me by the hep, in fact I increased coffee intake because I heard it was good for the liver - that really made my life worse. I have a strong feeling that the leaky gut theory is correct and somehow gluten and caffeine are short cutting into my blood and making me feel awful and I strongly think that this has had an impact on my bile ducts. I’m looking forward to seeing if there has been any affect on my lft at my next appointment. I hope this post is helpful.
Thanks for the update! My boyfriend was diagnosed with PSC about a year and a half ago. I did a bunch of research and it seemed like leaky gut was part of the problem. I had him start a diet called the Autoimmune Protocol, which is basically a very restrictive paleo diet. I think it did help with the symptoms but he lost weight really fast. Sarah Ballantyne is the one credited for making this diet, called AIP for short. Anyways the doctors also laughed at us for thinking diet had anything to do with this disease. I’m glad your symptoms have improved.
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I’ll just chime in with one more small duct PSC story…I’m reading this and realize there is no one progression. Last year my 19YO was diagnosed with small duct (stage 3, normal MRCP, massively elevated LFTs) and had NO symptoms (only routine blood test due to a 3 month lack of her period exposed the LFTs). SHe was about to enter cirrhosis…all 4 doctors she saw were amazed she didn’t have one symptom (except lack of period). She started taking oral vancomycin (250gm, 4x a day, ANI brand) and all numbers returned to normal after 2 months and the dr believes her liver is healing becasue her periods started again (she will have a fibroscan this month to see since it’s now been 6 months). I strongly urge anyone with PSC to try to find a doctor willing to prescribe and try it for a couple months. There is plenty of info online about it (just google PSC and oral vancomycin…a great article about dr. Ken Cox in Stanford called The Disappearing Liver Disease that started the whole discover. Oral vancomycin is poorly absorbed so you can’t build a tolerance, and Dr Cox’s first patient is still taking it 25 years later adn doing fine. It doesnt seem to work for everyone, and I don’t know if it will stop working with my daughter, but I’m so grateful with every good blood test. I feel like we are all in the horrible boat together with no one at the helm so we have to lean on each other for support and information. Such a rare disease and so hard to get research and trials. Good luck!
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Thanks for your story. My son is due for his first MRCP follow up. He’s doing well but it’s time to think about Vancomycin. I’m really quite overwhelmed by the decision. For the past year or so it has been a source of hope for me. But now that I’m ready to press the issue with our specialist I’m just so frightened that my son will be one of the ones for whom it doesn’t work. Clearly I just have to face it of course but I’m bracing myself for the next chapter of this PSC nightmare.
Hi Melanie, I was the total opposite as you…I couldnt wait for her to try Vanco…I spent weeks and lots of money flying across the country to finally find a doctor to prescribe. For me, vanco meant hope, and hope is the best thing there is. I was a wreck from morning to night before vanco, even in the middle of the night because I couldn’t sleep, and would wake up counting liver enzymes. So when we got the prescription, and I held that beautiful vial of hope, I was as happy as I had been in 6 months. There is no downside to trying vanco (except if your insurance won’t pay for it). And, from all I’ve read (and I’ve read a LOT), it seems to work best if cirrhosis hasn’t set in, and there is UC. BUT, I’ve read many cases where is helps even if those aren’t true. And, it doesnt seem to take long to see results…two months tops. For us, after 2 months, all levels normal. And I mean all levels, even her cholesterol which was crazy high. And now I can sleep just fine and I haven’t cried about her disease since February when she swallowed her first pill. Vanco has given us both our lives back. I know it could be temporary and vanco might stop working, but I smile every day and don’t obsess or spin with worry. Friday she takes her first fibroscan to see if her liver has been able to repair itself (she was on the brink of cirrhosis according to her liver biopsy) so we will see if vanco has possibly reversed some of the damage. I’ve read that happens sometimes. Once again, I have hope, and I love hope!
Remember whether you get 250mg 4x a day, or 150mg 3x a day, try to get ANI brand (we order it at Walgreens. It’s what Dr. Cox uses). I’m not sure if other brands would work just as good for my daughter, plenty of people have other brands that seem to work for them, but I’m not messing around with success. Good luck and keep me posted.
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Thanks so much Joki. I did ask our specialist about Vanco early on and he was either completely unaware of it or just totally against it, I’m not sure which. But he has been more open to the idea lately so I’m waiting until my son has his MRI and I’m going to ask our doctor to prescribe it or we’ll find someone who will. I am in Australia and I don’t know if it’s being prescribed as much here but I think it is beginning to be adopted as a treatment option. The public health system here funds Vanco so we don’t have the same issues with insurance but I don’t know if we have ANI. I have to do some research on that.
It’s definitely time to do the Vanco and I think you’ve made me more hopeful so thank you!
I wouldnt worry about the brand so much…try whatever kind you have and see if it works. BUT, if it doesnt work, then see if you can get ANI brand (its the generic but may be called something else in Australia). I’m so jealous you can get it covered where you live. The insurance in USA sucks! BUT, I hear it’s worse in Europe and people actually come here to get it because they can’t get anyone to prescribe Vanco there. I do suggest that your doctor follows Dr. Cox’s protocol of either 150mg 4x a day (the most common) or 250mg 4x a day (thats what my daughter takes, as do many others, and has had success). It should take 2 months to normalize…or at least make a big difference, although UC symptoms stop a lot faster (my daughter doesn’t have any so we never say any difference).
Please don’t be scared about your child taking it. There really is no downside. Please keep me posted and you should feel lucky. There are only about 8 doctors here in USA that prescribe to adults, so you being able to get it so easily, and it being covered, it great. Good luck and keep me posted!
Joanne
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I will definitely report back. Thanks for the encouragement, it really does help a lot. Our doctor has agreed so we’ll do some research and discuss it over the next couple of appointments!
Hi Joki . My son 19 years old has been sick off and on since November of last year. He started with nausea, vomiting, diarrhea and became jaundice after I picked him up from college. His main common bile duct was dilated , pancreatitis with elevated amylase and lipase. Fever . He was in the hospital for 7 days and was diagnosed with acute gallbladder infection. Started him on Flagyl and Cipro and he started feeling much better.
We got discharged from the hospital but as soon as he stopped talking ATB his symptoms would come back fever elevated liver and pancreas enzymes. He had a gallbladder removed in January of 2020 so they did a liver biopsy then too which was normal. Because of over use of ATB he developed a c diff which is only treated with oral Vancomycin as soon as we started it he started feeling better. After 6 weeks we checked the blood work and the enzymes were normal, but 4 days later from stopping it his symptoms would come back and the enzymes would go up .
He had 3 ERCP, 3 MRI , two abdominal cat scans , US all normal.
He was tested for all autoimmune liver decease all negative even PCP caused my autoimmune pancreatitis was negative IGG4.
About 2 months ago we stopped Vancomycin po and started URSO 300 mg three times a day and it was working for 2 months liver enzymes went back to normal, however he started with stomach pain and symptoms came back again. So he had ERCP done last week and the doctor said it is consistent with small ducts PSC.
We started him back on Vancomycin again and his dose is rather small 125 mg twice a day but we know this does works for him from before.
He had colonoscopy and endoscopy both normal so no UC or bowel problems .
Any advice for us ?
I thank you so much.
Desperate mother
Hi Olivera, May I ask why, if he was doing so well on vanco, why he went off of it, and why, when it was resumed, the dose is only 125mg per day instead of 1000 or 1500 as recommended? For my daughter, Urso too lowered the numbers, but never to the point of the normal range, and it didnt stop the progression. Vanco was the only thing that did that and with no side effects.
Hi . Thank you for responding back . Because he was never diagnosed with PSC till the last week. His biopsy was fine did not show any problems with a small ducts, however she was able to see it on the last ERCP. We just started the Vancomycin because of the CDiff and I knew it was working for the liver too because the enzymes were going down but they were not believing us . So as we were tapering him off the Vancomycin which is what you do when you have C diff we resized or discovered that two doses per day were working.
I think he needs a second liver biopsy to confirm the diagnosis.
I thought that was the only thing that would confirm it . All his other ERCP were fine so is the MRCP .
What do you think?
I made the appointment to take him to Mayo Clinic in November.