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Primary Sclerosing Cholangitis (PSC) - Online Support Group

New Member Diagnosed 1 Year Ago

Hello I’m a new member to this site but this isn’t the first time I’ve visited this site. I was diagnosed with PSC September 2017. I started having symptoms in August with really bad itching. It started on my feet but wasn’t enough for me to really care to do anything about but then it got to the point where I couldn’t sleep because of it. I thought maybe it was just athletes foot or some kind of problem with a simple fix. I used powder and cream on my feet for a few days but then my whole body started to itch. I started losing my weight and my appetite. My girlfriend noticed my skin was yellow and I started seeing it in my eyes.

So she took my to the ER and the guy at the front desk said " Oh look we have a yellow guy!" I gave them a urine sample and then they put in an IV and gave me an ultrasound on my liver. They quickly took me to a different hospital where I could see a team of specialists and stay in the hospital for a few days. I had lots of labs taken to figure out what was wrong with me. The ER had no idea what was going on with me. I had an MRICP done and tests for different diseases to narrow it down. They said they believe I have PSC and possibly auto immune hepatitis and an inflammatory bowel disease. I had to wait a month for the liver biopsy appointment and results. My specialist confirmed that I have PSC and Auto Immune Hepatitis and stage 3 fibrosis.

Six months later I had a colonoscopy and results came up negative for an inflammatory bowel disease. I wasn’t sure how to take the news because I’ve read that people who have UC and PSC do better than people with PSC and Auto Immune Hepatitis. I don’t know if this is really true or not but also less medication to take so I wasn’t too upset.

At the start of my diagnoses I was taking Ursodiol 2 and a half 500mg tablets, Azathiroprine 50mg(sorry I take it and I don’t even know how to spell it), and Prednisone 40mg. I eventually was taken off of prednisone because it brought my levels down some but not enough so I was eventually switched to Budesonide 3mg capsules but my levels are still high even after a year! So now I just take Budesonide,Ursodiol,Azathiroprine, Vitamin D, and Calcuim supplements. I also have Cholestyramine for itching.

I recently had an ERCP and I have an appointment on the 18th to discuss the next plan for my health. I have a stricture in my bile duct but it isn’t bad enough for anyone to do anything about.

I thought I’d introduce myself and describe my situation like I’ve seen many do on this site. I was wondering if anyone else has had this situation where your numbers are NEVER in the normal levels ever? I asked my specialist if there was anything I could be doing to help like change my diet or something. He said diet doesn’t matter with PSC just get exercise and take my medication every day. He said that I should get really good insurance but no matter what if I eventually need a liver transplant no insurance is going to pay all of that extremely expensive bill! Has anyone gone through SSI and worked part time or have you had to get a fulltime job just for the insurance? I don’t know what I should do. My mom wants me to try for SSI and work part time but its no guarantee that I’ll even GET SSI. I thought about just learning a trade just for the sake of getting better insurance through a union job and having job security.

Anyways I should probably end this novel. My next steps are my appointment, setting up new primary care because my old doctor doesn’t take my insurance, and setting up appointments for therapy and dermatologist. Thank you for listening and thanks for letting me be apart of this site.

Randall.

Randall,
Welcome to the group and thanks for sharing your story with us. What you have described is not uncommon to many of us with PSC. I’m glad you are under the care of specialists to deal with this disease. This is very important. I’ll comment on several of the things you mentioned and will certainly follow up with more after you respond. I’m sure others in the forum will do the same.

  • Was your ERCP done by one of the specialists at the transplant center where you saw the hepatologist? What was your bilirubin level at the time of the ERCP and what has the level been since the procedure?
  • Do you know what your MELD score is? Here’s a link to an online calculator. We’d appreciate if you would run your numbers and give us what you come up with so we will have a better idea of the disease progression. https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
  • Regarding diet, I was told the same thing. And when it comes down to it, as the disease progresses you are just going to have to eat what your body will tolerate. There will be certain foods you may not be able to stand the smell or taste of, that just comes with PSC. It is important especially in the later stages of PSC that you keep your protein levels up, get good exercise each day to maintain core body strength so you will be physically fit to go through transplant surgery when that time comes down the road.
  • It is important that you get a good health insurance policy. If your income qualifies I’d go for one of the Marketplace policies. Try to get on a silver plan, something like Blue Cross Advantage is a good plan. Make sure the transplant center as well as your hepatologist accepts the insurance plan you are going to choose. You still have time to sign up with healthcare.gov. Unless there’s some reason you cannot get a good full time job, I would not pursue SSI. You need good insurance coverage with PSC. Transplant surgery will cost over 1/2 a million dollars before it’s all said and done.
    We are here for you Randall to help in any way we can through this process. The more you educate you and your family about PSC the better prepared you will be to face this battle ahead. Keep hope alive my friend as you deal with this. You have a full life ahead, so don’t let this disease get the best of you. Take care!

Mark
PSC 2011 / Liver Transplant 2015

Randall, welcome to the club! Sorry you have had these troubles.

A lot pscers have gone through a lot of what you described. I was diagnosed when I went to the ER thinking I was having a pancreatitis attack. They looked at my bloodwork and ultrasound, and did not like what they saw. So they admitted me and did an ERCP the next morning. Boom-hit with psc.

The specialist gave you good advice on the insurance. Get the best you can, as what we go through is expensive, multiple trips to the ER, doctor’s appts, procedures all lead up to a transplant, if and when, when it really pays to have good insurance.

I have no experience with ssi, but there are members here who have. So I hope they chime in.

For your itching, my dermo prescribed Momeseta, a steroid-based ointment. That ointment made me a believer in it, although it is very different in applying it.

Let us know how things go.
Jeff

Hi Mark thank you for the response!

My ERCP was done at the hospital next to the building where my specialist is but was not done by my specialist. So far no procedure has actually been done by my specialist they’ve referred me to a different doctor at the nearby hospital. A brief history of my bilirubin when I first was diagnosed it was 7.5. It trailed down with medication to a normal level but then came back up to 3.0. and since then it’s been going back and forth to 2.7 to 3.0 as shown from my labs. The labs I got before my ERCP showed that my bilirubin was at 2.8.

As far as a MELD score my specialist hasn’t said anything about it yet. I believe they are trying to get my levels stable with medication first or maybe I’m not sick enough for a MELD score? In that area I’m not certain.

I try to get protein up. My specialist said if I have meat in every meal I shouldn’t have to worry too much and they are always monitoring my calcium and protein and they haven’t said they are bad so I don’t know.
I try to walk for at least a half hour a day (usually it’s way more! I live in the city and I don’t own a car so my feet are my transportation!) for exercise.

I’ll try to ask about that plan on my upcoming interviews. I’ve been applying around town and online to get full time work. I agree with you about SSI I just needed to know someone else thought the same way. I feel like SSI is there for people who absolutely need it and I don’t believe I’m at that stage in my life to where I need it.

I appreciate the kind words and Info Mark! Thank you again for welcoming me to the group.

Randall

Hello Jeff thank you for the welcoming!

God that sounds awful were you in a lot of pain? I’ve been fortunate enough to not have abdominal pain. I just have the constant itching! Sometimes it’s my whole body and sometimes its hot spots or something. Like it’ll only be my thighs feet and collarbone area but its INTENSE! I could never believe how uncomfortable itching was until I was diagnosed with PSC. Not being able to sleep because of it is irritating.

When I get an appointment for a dermatologist I’ll definitely ask about the momeseta. I usually use cholestyramine when i itch twice a day for 2-3 weeks and it helps a little but then i get constipated and sick feeling. I don’t know if it’s in my head or a real side effect. I also use benyrdil at night for really bad itching episodes and that seems to bring some relief! I met someone who has PSC, it was my nurse it was really random, and she said she tried benyrdil and cholestyramine and tried everything and nothing works for her itching! I can’t even imagine the feeling of having no relief. I just said I’m so sorry and I hope she’ll find something that helps.

I’ll try and update major moments in my life on here. Good or bad I’ll try to use this site. This site has been helpful to read through and see other peoples stories for the past year so maybe I can affect other people with my story like other peoples stories have effected me.

Thank you for your response Jeff!

Randall

Randall,
You might also want to ask your hepatologist about Rifampin. I was on 300 mg twice a day for the years between diagnosis and transplant. It is the only thing that would take the itching away. It doesn’t work for everyone but was a life-saver to me. It’s by Rx only. Hope this helps.

Mark