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Small duct Psc vs Classic PSC symptoms


#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!


#28

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.


#29

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.


#30

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!


#31

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


#32

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!