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Small duct Psc vs Classic PSC symptoms


#8

Mark,

Thank you for sharing this. I had my car in the garage the other day for a new clutch. The mechanic told me I had very few miles left in the old clutch. I would say the same for your old liver!
Interestingly I also had the darkened skin also for a few months but this cleared up. The changes I made at that time were improving my diet and stopping drinking alcohol. I’m not sure if that helped with improving the darkened skin, but I haven’t had it since.
I am starting to think that small duct patients may have a wider range of symptoms at a much earlier time but also at much less severity. I would be interested to hear from other small duct psc’ers out there on their experience of symptoms.


#9

My son has small duct PSC and we’re new to this and don’t quite know what’s what. My son keeps getting a low grade fever and is quite pale and I was wondering if this is a common symptom generally or whether it could be a feature of small duct. Our GI just shrugs her shoulders about this and all his swollen glands.


#10

Melanie1,
Hi…The last sentence in you post set off a red flag in my mind. My first advice to you would be to find a hepatologist connected with a major hospital that does liver transplants. You don’t need a local GI taking care of your sons liver disease, espcially PSC. Go find a hepatologist yourself and self-refer him if you have to. Shrugging ones shoulders does not get it in my book. Liver disease is serious business and the sooner you get him under the proper care the better.
Regarding the low grade fever, it sounds like he might be having a small infection in his bile ducts. If the fever gets above 102 you need to take him to the ER. Hopefully it’s nothing serious, but please find him a transplant hepatologist soon. Let us know of any way we can help.

Mark
PSC 2011 / Liver Transplant 2015


#11

Thank you, following this up now.


#12

Hello Melanie,

My son has just recently been diagnosed with Small Duct PSC. I AM SCARED! My son is only 15! How fast does this disease progresses? What can I expect?


#13

I’m so sorry. Small duct PSC is less aggressive and is less likely to cause liver cancer. The progression is slower on average which gives you more time. I’m in the process of getting a second opinion from a hepatologist and will be asking about vancomycin as my gastroenterologist didn’t mention it. I’ve only just stopped spending every day crying and feeling overwhelming panic and I know you’re scared.

The advice here has been great, everyone says let your son live his life normally, let him have fun, get him to exercise. Do your research, look at vancomycin and keep up with the research. Also best to stay away from some of the internet stuff as it is very frightening. I’m really sorry though and I hope you can find your way through this.


#14

Lenora,
Hello and welcome. I know the news of this is frightening to you but
there is help and hope. The best decision you will make right now is to
get him under the care of a hepatologist associated with a transplant
hospital, not your local hometown GI. This is key to his long term care
needs. As Melanie stated already, small duct psc generally progresses
slower than large duct. Educate yourself all you can through this site,
make sure your family has a full understanding of the facts of what you are
facing, you will need their support in the years ahead. But for now, let
him live his life as normally as possible. Don’t mother him to death,
worrying about his every move and what he eats, just let him be the young
man he is and his body will tell him when he needs to rest or further
intervention is needed. This is very important. He may live many many
years before anything worse happens with the progression, so just take one
day at a time. We are here for you to help in any way we can.

Mark
PSC 2011 / Liver Transplant 2015

Mark Wilson

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#15

Hi Mark,

Thanks for your supportive words. I am trying not to baby him too much, but it’s difficult for a mother to see your son is in this situation, and not know what will happen next. I would do anything to give him my liver and let him live a long healthy life.
Leonora.


#16

Hi, I didn’t know the difference between small and large duct PSC until my visit with an actual transplant doctor this week and then reading this post yesterday. I have small duct PSC.

I’ve probably had this disease between 5 and 10 years, but was just diagnosed. I hope it stays slow moving.

The itching comes and goes for me. Sometimes I’m beyond tired, beyond exhausted, and into severe fatigue like I’ve read so many people here struggle with. It comes with muscle weakness, to the point I don’t have the strength to lift my arms or move my legs.

The transplant doctor and I talked about some more severe symptoms I had last year, and she’s pretty sure that was an infection that went untreated, but now I know what to look for and what to do. The infections are horrible. But for the most part day to day is okay, I’m just tired most of the time. I don’t get nausea associated with the disease, like I’ve read.

Thanks for this post!


#17

Hi michrichwood,
We’re you diagnosed by biopsy? That’s how they diagnosed me in January 2016. I am sorry to hear the extent of your fatigue. I have to say I have never had it to the extent that I can’t lift my arms and legs but it still causes me big problems. Especially at work when I am chairing meetings. I honestly don’t know how I get through them. It’s like living in a permanent brain fog and I find it hard to think straight. I think I have probably had this disease for 3 or 4 years at least and the fatigue back then was the first sign anything was wrong. I have since found that caffeine makes my tiredness worse (strangely!) so I have given up coffee even though it’s one of the only proven things that has a protective effect on the liver. I also use mindfulness, yoga, counselling and diet which go some way to making me feel less fatigued.
What were the severe symptoms you refer to? Was it actual pain in the liver area?


#18

I was dizzy and so weak. No appetite. Brain fog like you wouldn’t, but probably would, believe. I slept and slept. Every movement left me winded. I can’t remember all of it when I try to think back, I just remember it being so debilitating.

I had a biopsy first, then the MRI. My original doctor was reluctant to diagnose. So I went to a liver transplant hospital. I thought the new doc would want to do more tests, but in she walked and just gave the diagnosis. She said the biopsy showed the classic “onion skin” which I didn’t understand or remember hearing before.

it’s tthe periductal concentric fibrosis reference.

I need to be more consistent with meditation, like you! I do find that the whole foods, plant based diet I adopted last year has helped a lot. I’ve cut out all oils and try to only eat fats from nuts and seeds.

Good to meet you!


#19

Nice to meet you too! I had the ‘onion skin’ too in my small ducts and my understanding that as there was no other explanation, a diagnosis of small duct psc was given. It was described by the doctor as a ‘diagnosis by exception’ I.e. everything else had been ruled out so only small duct PSC remained as a possibility.
What took me to hospital in the first place were symptoms similar to what you experienced. I had huge fatigue, rapid weight loss, night sweats and periodic pain under my sternum particularly after drinking alcohol. I haven’t had these symptoms since. I was never given an explanation for them apart from being given the SD PSC diagnosis. I do wonder if there was more going on for me at the time like a minor infection.


#20

Wow. So, no other symptoms since? Did you have an MRI? Are your liver enzymes elevated? Do you still experience fatigue?


#21

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.


#22

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. :frowning_face:
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! :sunny:


#23

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?


#24

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. :wink:


#25

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.


#26

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.


#27

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!