Primary Sclerosing Cholangitis (PSC) ~ Anyone dealt with this before?

[phorsenuf]

They think my MIL has this. She's being tested today. Curious if anyone has any first hand experience with it, or know someone that has.

Thanks

 

[phorsenuf]

Selfish bump

 

[dumboiu]

I can't help you unfortunately, but I can offer this *bump* in case anyone can!

 

[princess momma]

We have a friend who has it. He's been on the transplant list for about a year but he's mostly stable and I assume not very high on the list.

 

[LoriMouse]

In March my husband had a liver transplant due to PSC so I guess that puts me in the "first hand knowledge" catagory. It shouldn't take too long to get the diagnosis and then there are some procedures, such as stents, to try to slow the damage down. It was about 14 years between the time his liver levels started show signs of disease until his transplant date.

 

[Sue Nielsen]

I was diagnosed with PSC in 2002. Had 12 weekly stent changes for 6 years but am now stable on UDCA and Salofalk for the associated Ulcerative Colitis. I regularly check out the clinical trials.com website and am following their trail of DHA - the only substance hypothesised to improve PSC. If anyone has heard of the trial results, would like to hear about them. Diet and exercise seem to give the best results. Good luck!