New to this group... And this disease

Hello. I am a 42 year old female who found out I had PSC in April, 2014. Last summer I was denied a life insurance policy due to high liver blood test results. After going to a couple different doctors, I was lucky enough to get an appointment at Mount Sinai Hospital. After more blood work and MRCP my doctor wanted to do a biopsy which confirmed I have PSC. He explained it is in the very early stages. He put me on Ursidiol twice a day.

I joined this group to learn more about this disease. As of now, I don’t have any symptoms at this point but after reading some peoples it is scarier then I thought… I guess I am in a bit of denial still. Trying to eat better and stop drinking as much. Hope to learn and be enlightened a little this forum.

Hello unfortunately this is an altering life situation… skip the drinking … only if u are in a celebration and making a toast … other than that give it up … alot of us on here will give you different info and it will be good cause “WE” are the ones going through it or a caretaker. Ask questions because for newbies this is a scary rollercoaster

Hello KellKell. I am a 60 year old woman who has had Crohn's disease since the age of 10. My PSC was "discovered" via high liver blood test results as well about 3 years ago. I, too, was asymptomatic. I decided not to go with the Ursidiol since my Crohn's was active and I didn't want to add another med to the Prednisone/Aziothioprine that I was already taking. What may be interesting for you is that I went on the SCD diet (specific carbohydrate diet) at that time in an effort to help with the Crohn's and I have been on that now for almost 3 years. Over that period of time not only has my Crohn's moved in a much better direction but my liver tests are now normal. This may, of course, be coincidental. But I don't think so. I think lowering inflammation in general in the body, which this diet aims to do, lowered the inflammation in the bile ducts as well and improved my liver's overall condition. It is very similiar to the Paleo Diet. You might want to look into that.

Thank you all for the welcoming and advice. I am happy I found this site and am able to learn new things and have some support. The problem I’m having is because I feel fine, I feel as though I can continue the lifestyle I’ve been used to living. But this I know is my denial and fear of the unknown. When I was first diagnosed I was very strict with what I was eating and stopped drinking alcohol. Then I slowly fell back into my old routine. I realize I need to make some serious changes. Thanks for the reminder.

HI Kellkell33

I'm fairly new to the disease as well. I was diagnosed jan 2013. I'm still freaking out about this crazy disease. I have to agree with the others, skip the alcohol. The way I look at it is that I can stop drinking and hopefully have my liver a bit longer. :)

There are some days I would love a beer. Good luck with the changes.

Hi my name is Shawn I was diagnosed with this disease in 2000 I just turned 33 on Dec.19th. just wanted to connect with someone in the vicinity. I live in New Jersey. I just joined this group today!!! 12/28

Hi Kellkell33,
How high were the blood test values that got the attention of the life insurance company?

There is some controversy around udca. Most medical guidelines do not recommend it anymore (as clinics trials have not shown any improvement in survival rate. Also, high dose udca increases cancer risk).

There are now several promising new drugs in clinics trials so I’m hopeful that one of them will provide real benefit in the next few years.

I agree. The liver transplant doc took my daughter off the ursodiol due to the lack of data about the drug being helpful.

Hi, there was a lot of discussions after the Lindor study with high-dosed UDCA (urso) has shown a negative outcome compared to placebo. The low-dosed urso is proven to be safe. If you want to read more about that, go to: