To those who have "quiet" disease

I was diagnosed about one year ago...completely asymptomatic. Had liver bx, MR of liver, colonoscopy. Like most, I have UC as well, also VERY quiet. My LFT's at presentation were pretty high, 600-800 range but bili was nl. Antibody panel supported PSC as did biopsy. I also got a spondylparthropathy, which is a painful inflammatory arthritis associated with UC. I was lucky and this responded to aulfasalazine. I also take URSO, although there are no clear studies regarding IF it helps and IF it did what dose. FWIW I take "low dose" (one cap 2x a day). I really have no itching, no pain, no GI symptoms. I live, enjoy a glass of wine, and am happy. I wll say that I probably had this 5-7 years ago when I also had elevated LFT but a less intense work up. So......anyone out here with quiet disease, years under their belt???? The literature is old, of limited value but can be scary if I allow myself to read it. I have 2 children 7 and 9 and would love to see them of to college without being sick.

oh, forgot o mention, my LFT's are normal on sulfa.

Hi Bunny

I was diagnosed with PSC and UC when I was 11 and 12 years old. At that time I was sick...really bad itching, liver enlarged, and all LFTs off the charts. However, since I have been pretty healthy...with the exception of a few bad UC flares. I am now 36. I have intermittent pain and some other random things which occur with my health, but nothing that anyone can tie to my PSC. For the most part, things are quiet. Up until recently I enjoyed wine a few times a month...but am taking a break because I have had some symptoms lately. Compared to many with PSC and UC, I am in great health and have had a similar experience when I dive into the literature. I get very scared and think, "when will my time come".

I do a lot with nutrition and believe my health benefits from that. I take colozal for my UC and colestipol for my itching. I take a multivitamin that has some botanicals in it like turmeric. Other than that, I eat super healthy and try to get lots of sleep and take lots of walks with my dog.

I believe you can have this disease and lead a normal and healthy life.

Hi HeartToHeal
Thanks a lot fr sharing ur Positive story… now I cn hope fr better hope for my mom…thank u again… God bless :slight_smile:

I would say I’ve got “quiet” PSC as well, diagnosed 10/2012 and asymptomatic as well. I just picked up a copy of “The Paleo Solution” by Ballantyne. She’s advocating the maintenance and possible healing of autoimmune conditions via diet and nutrition and has reported some really good results. It’s something that may work well for you and your whole family as the standard American diet certainly isn’t doing us any favors.