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Primary Sclerosing Cholangitis (PSC) - Online Support Group

PSC Diagnosed in 2013

Hi People,

My PSC started in 2013, I had severe body itching all over my body, when I visited a general physician he recommended to have an ultrasound abdomen, after various scans and tests it was confirmed I have PSC, my bile duct is so abnormal that I had to have stents placed every 4 months to keep it open. Sometimes, it feels like why I have this disease I can’t enjoy most foods like my friends does, I can’t do sports or any heavy exercises. I have lost over 40 pounds since this disease and it keeps on losing. No matter what I eat, the conditions seems to not improve. I believe with the help of this community I will be able to communicate and educate myself more on this disease.

Mithlchandok,
My weight loss has stabilized for now. Last summer, when my weight loss was more pronounced, my sister=in law who is a crackerjack nurse, put me on an ice cream diet. I liked that diet!

PSC can be an isolating illness and will often play mind games on you, such as asking yourself why you have this disease. There is no good answer to that. Both my brother and I have lost our large intestines due to colitis, and his liver enzymes are fine. Yet I have psc and he does not. Why, again, no good answer.

I am glad you are researching and learning more about this disease, as knowledge is power. I also hope you are under the care of a liver specialist, and not just a gastro doc.

What is your current meld score? With stents every 4 months, seems like your liver damage is pronounced. I went from moderate liver damage when also diagnosed in 2013 to severe damage relatively quickly and have had several ERCP’s but not as regularly as you.

PSC will test your flexibility, your sense of humor and your patience.

Has your itching improved?

Hi Jeff,

The itching is constant but not as regular as it were before, but I still had severe panic attacks of itching on my under feets and palms, sometimes I had to hold ice in my hands to relieve from itching as my hands get too hot. I don’t know about MELD score and neither my doctor told me about this. But I did found this calculator, http://reference.medscape.com/calculator/meld-score-end-stage-liver-disease and run the numbers, Creatinine, 0.79 mg%, Billrubin Total, 3.93 mg/dl and PT/INR 13.1 sec. The resulted number is 38. The liver function has never came back to normal since the diagnosis. It is always elevated, especially SGPT* and Gamma GT*.

In my country, India the disease is very rare, not many people know about it, neither some good research articles are published here. Civil hospital doctor’s are educated about the disease but the only prominent solution they offer is Liver Transplantation, which is a costly as well as a very risking plan. I met some private doctors they do help to relieve the symptoms with constant ERCP’s, the only solution, I have been told could work in my case, if I don’t want to get a liver transplant. Either way liver damage is for sure coming in my future years.

I don’t know how many years I have, but if this is the way it should go, then why not learn more and educate myself, to lead a better life till the time I could.

The most recent liver tests and ERCP were conducted in January 2017, I was also found negative on P-ANCA* and C-ANCA*. This is the time when my doctor also performed a colonoscopy and he said that I might also have colitis or IBD.

What would you advise I should eat to control my diet as well as keep in check of my weight loss?

I can’t take on fatty and greasy foods, so I avoid milk, butter, creams, cakes, etc. I do take some ice cream but in very small quantities. I don’t do red meats at all, avoid eggs, when I can. But do like chicken. And, almost all veggies and fruits. Especially the ones which are rich in fibre content as it helps to relieve the stomach stress. What else? Please help?

I lost 25 pounds back in 2013 due to nausea and fat sensitivity. My weight gain solution was to supplement my meals with medium chain triglycerides (MCT) in combination with treating my PSC with oral vancomycin.

Fat is important to maintaining and putting on weight as it is twice as calorie dense as carbs or protein. Eating most dietary fat (long chain) causes a hormonal response that induces the liver to produce liver bile. In our case, this bile has a hard time flowing out of the liver and this can sometimes exacerbate symptoms as well as making it hard to digest dietary fat and fat soluble vitamins that need this bile to be absorbed.

The work around to this issue is that short and medium chain fats can be absorbed directly - they do not cause the liver to produce bile and do not require liver bile to be absorbed through the gut. Unfortunately these fats are somewhat rare from natural sources, the best being coconut oil that is about 60% medium-chain fats. MCT oil is also available online and is 100% of these fats. I would drop a tablespoon of MCT oil in my meals or drinks as a source of additional calories and to help the absorption of fat soluble vitamins.

If your doctor has not checked your fat soluble vitamin levels (ADEK) or checked bone density, I would strongly encourage you to request that these get done. From experience, osteoporosis sucks and is a very real concern for anyone with PSC.

Here’s a source for MCT as a supplement for PBC and PSC patients: https://med.virginia.edu/ginutrition/wp-content/uploads/sites/199/2015/11/AlnounouArticle-April-06.pdf

Hello,
You mentioned your MELD score is 38. You are at a very dangerous level and need an immediate transplant soon. You need to ask them to escalate your case for transplant evaluation right away. Please take this score seriously. Not trying to scare you but your life may depend on a donor soon.

Mark
PSC 2011 / Transplant 2015

I think the MELD may not have been calculated correctly. The INR number listed is measured in seconds and is in the normal range of PT suggesting it is just PT and not yet converted to INR. Creatinine is also normal.

Hi JTB,

I just checked with the correct INR value, the new Meld Score is 9. I am sorry for miscalculating. The only oral medicine I have been prescribed to is Ursodeoxycholic Acid sold as Udiliv or Ursocol in India. The dosage is high, 600mg twice a day.

I will take your advise and will have MCT oil with my meals. I will also ask my doctor about conducting the bone density and fat soluble vitamin levels tests. Thank You for helping me.

Hello Again,
I’m greatly relieved you had calculated your MELD wrong. I was mobile at the time and was responding from my cell phone so didn’t study your data closely. You had me scared there for a moment you seemed so casual and non-worried, but a true MELD of 38 is screaming at me that you are almost dead! So thankful. Take care!

Mark

Hi Mark,

I am so sorry for all the miscalculations. I am new here and is learning from you. Sorry again. Thank You for all the help I am receiving.

Mithilchandok,
Sodium is now a part of the meld score, and there are a lot of calculators you can find on the internet that have not been updated. The link you provided evidently is one of these. Find one for which you can add your sodium level. You do not want to go below 136, as a low sodium level can move up a meld score rather quickly.

I hope the docs can let you know a definite diagnosis about chrons’ or colitis. When I had colitis, what I read is that diet will affect different people differently. So trial and error was the rule. You have already figured out some things that work and don’t work. Try to keep a journal to record what works and what doesn’t-beats relying on memory.

When it came to veggies, the rule of thumb is if you can cut it with a fork, you’re good, meaning steamed or otherwise cooked, but not raw. Listen to your body and what it tells you.

Agreed that fatty foods should be avoided.

Hello again mithilchandok,
Just to follow up on Jeff’s last post, I took a look at the link you provided and it doesn’t take into account sodium levels after all. I would suggest you try this link which is the one used here in the States for organ allocation. It is the newer meld scoring model calculator.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/

Mark

Speaking of itching, I have it constantly. My doc scolded me for not taking the medicine I started on and had been taking awhile, which was not doing anything noticeable. I was sent him without a clear idea of what I was to do for the itch. The only help out of sertraline, cholestyramine, naltrexone, benadryl, and ammounim lactate cream has been an OTC cream called Sarna. Otherwise I have zero relief from itch and I conk out in the middle of the day. My last MELD was 12. First the nurse comes in and puts information into the computer, then the doctor comes in and has an entire appointment with the computer. I just happen to be in the room. Frustrating!!

Are you seeing a hepatologist or a GI? You need a hepatologist with PSC. Ask about Rifampin for the itching. 300 mg twice a day was a miracle for me. I’d find another doc if you are not getting the care you deserve.

Mark

I’m seeing a Heptalogist at a transplant center. She has had three appointments with the computer so far. I just happen to be there in case she wants to check my hearbeat for two seconds or ask one or two questions before she makes one or two pronouncements and flies out of the room. She also had me in the hospital recently for three days. She was happy to teach the residents about my case. So I feel she has cared for the residents and the computer quite well. Me–not so much.

Well until you put your foot down and demand her attention away from that computer I feel sorry for you. Are you taking someone to your appointment with you? You need an advocate with some backbone to get this doctors attention. If she isn’t interested in serving you, demand another hepatologist. A transplant center will have plenty of them! You must take control of your situation and not take this lightly. PSC is not something to take lightly my friend.

Mark

This transplant center only has two hepatologists, and the other one is loathed by a former primary care doc of mine. I say that means two strikes and they’re out.

Well, you need to find another center. Either get this woman’s attention or go somewhere else. If you have to, report her to the state medical board, but PSC will not just go away because you are not getting the care you deserve. My friend, there is hope and help. PSC does not have to be the end of the line for you but you must take charge now! We are here for you if you need us.

Mark

Yeah, and this is considered one of the finest centers in the country. Oh well…anyway I’m very glad to have your support on here, I can tell you this most definitely…

Hi Mark,

I checked with the newer meld scoring model, the link you provided. The calculation resulted in MELD score of 12.

How bad is it? What should I do?

Hello again Mithilchandok,
I know each of us are different in our rate of progression with PSC but for me here is what happened.

  • When my MELD hit 12 my hepatologist referred me to the committee for transplant. I went through the evaluation in December 2014 and was listed in January 2015.
  • In April, 2015 my MELD shot to 19
  • In July, 2015 my MELD shot up to 36. I was transplanted 2 days later.

So things “can” move very rapid very quick, but things may not move that quick for you. But, that being said I would definitely ask the doctor to refer you for transplant and get yourself listed. I hope this helps.

Mark