Brad from Arizona and yellow again!

Hi everyone! I’m new to this site, and I have many questions. I’ll start with my bio and I’ll also try to keep it short (I tend to ramble). I was diagnosed with UC in 2007, PSC in 2010 (that felt like a punch to the gut). I didn’t have any symptoms from the PSC until November 2013. I got very tired on a Sunday, my day off, laid down and woke up 5 hours later jaundiced. This led to ERCP’s, MRI’s, blood tests and a stent. Anyway, early January of 2014 I was diagnosed with bile duct cancer. it turned out that I was at stage 3 and had the Whipple surgery mid January. Six weeks later I started 6 month’s of chemo and radiation. I have been in remission for 3 1/2 years! I’ve been fine until about 2 month’s ago, jaundiced again. Several tests later and it’s not liver, or bile duct cancer, that’s good news! The bile ducts that they can see outside of the liver are not strictured, so it must be the ducts within the liver which they can’t stent.
I work in the public and it’s hard to hide the yellow and my weight loss. So my 1st question would be has anyone had success with Ursodial? I tried it for a couple days and I got dizzy and nauseous. My Dr. wants me to try again. As for weight gain outside of eating like a pig, what has worked for some of you? I try to go to the gym as much as I can (maybe 3 days a week), has anyone tried creatine to pack on muscle? Is creatine safe for PSC’ers? My bilirubin has gone from 9 to 6. Has anyone experienced the numbers to keep going down even without stents?
In a way I’m kind of new to dealing with just the PSC because I’ve been so focused on testing every 6 month’s for cancer.
I’m going to stop here and sorry for the loooong post, I tried to keep it short!
Thanks for any answers to my questions and I’m so glad I found this site!!

1 Like

Thanks for your post. I will respond to your post hopefully this evening. In the meantime what is your current MELD score? How long have you been cancer free? You’ve been through a lot. I’m hopeful you are eligible for transplant listing. Will write soon.

PSC 2011 / Liver Transplant 2015

Hi Brad. I will be praying for you! Think positive!

Hi, Brad. With the multiple ercp’s I have had, the doc never had to put in a stent. And the rcp’s brought down my bilirubin every time.

As far as diet, I like grazing throughout the day with lots of snacks instead of a full breakfast, lunch and dinner.

I was only on ours very late in my psc, so I can’t say it helped, but I have not tried creatine.
Being now post transplant, I have been told I will be on urso long-term.

Glad you’re working out.


Hi fcmmark,

I don’t have a MELD score yet because I haven’t been to a liver transplant hospital. That will be in November or December. I have a referral to St Joseph’s Liver Disease and Liver Transplant Center in Phoenix (I live in Tucson).

I’ve been cancer free for over 3 1/2 years. I’ve been told that in AZ you have to be 5 years in remission to be put on a list.



Thank you Idoc !!

Hello again. Regarding Ursodiol, yes I had some very good results with it early on with PSC. Although my time from diagnosis to transplant was relatively short, I’m sure that I had the disease many years prior but didn’t know it at the time as the only symptom I can recall now thinking back was a constant suntan on my face. After diagnosis I was placed on 1200 mg a day Ursodiol which did help keep the LFT’s down in closer to normal range for much of the time. Of course, when strictures would form in the bile ducts the bilirubin and other LFT’s would climb again, but the Urso did help. I think it was more of a quality of life benefit for me rather than it actually helping the PSC. It keeps the bile thin enough to allow it to get around the beaded strictures in the ducts. --Regarding stents and numbers going down, yes my ERCP’s usually always resulted in my numbers going back down. In the earlier years they would drop down into normal range for a good number of months, but closer to the end no. I never had any stents placed as my doctor said the risk of infection from stents was greater than any benefit I’d receive from them being in. He’d rather repeat the ERCP’s more often than put a stent in. And I must say that throughout my entire sickness I never once had an infection in my biliary system.
I would encourage you to get yourself under the constant care of a hepatologist from here on out and get on the transplant list as soon as possible. As far as your MELD scores, if you have had liver labs from your regular doctor you can figure out the MELD on your own. It’s not going to a transplant hospital that determines that but getting the appropriate labs run. Instead of waiting till November or December ask your PCP to run a CBC, CMP with INR labs as soon as possible and you will get a much better idea of how sick your liver is. Here’s an online calculator to check your own score.

Keep in touch and let us all know how things are going.

PSC 2011 / Liver Transplant 2015

Thank you for the information! I feel better about getting back on the Urso, maybe now that I’m feeling better the side affects won’t be as bad (nausea, dizziness).

Thanks Mark,


Hi Brad,
I was originally diagnosed with PSC in 1989. My labs were good and I was symptom free until 2002. I went through three ERCPs, but my extra-hepatic ducts were so strictured that stents could not even be placed. So I was put on 1800 mg of ursodiol daily and this kept my numbers normal for three years. In 2005 I was diagnosed and treated for bile duct cancer and then received a transplant. But I do attribute my symptom free/normal labs from 2002-2005 to the high daily dose of ursodiol

Hey Payton,
Thanks for the info, my Dr. wants me to do 1,200 mg a day. I did this for 2 days about while working and I was nauseous and a little dizzy so I stopped. After reading your post I’ve decided to give it another try. I’m not working today so if I experience those same side affects it won’t be as bad. Maybe it wasn’t from the urso, I’ll find out. Anyway thanks again!

If nausea persists, ask your doctor to prescribe Zofran. That really kept my nausea tolerable. I took it daily for a number of years. It won’t make you sleepy.