I was diagnosed in November 2017 and have since been on Urso. I haven’t had any itching since I have been medicated, until about two days ago. Does this mean I am just having a small flare up, or is it an indication that the disease is progressing?
My question is, will it come and go?
Thanks in advance!
It indicates that your bilirubin levels have risen causing the bile salts to leach out into your skin which causes the itching. When was the last time you had LFT labs drawn? What is your latest bilirubin reading? For me, when my level got much over 4.5-5.0 it was one indication to me I had a blockage that needed clearing by ERCP procedure.
Keep in mind that the URSO is only a maintenance medication that helps thin the bile. It provides the PSC patient with a better quality of life during the early stages of PSC. It is not a cure, but only a way to keep things under control. I hope this helps.
Bilirubin is one of the best blood work indicators that a liver is having a bad day.
Itching, just by itself is something that pscers are very familiar with.
Intense itching is a sign of an elevated bilirubin, as Mark said. But I would not generalize that the disease is “progressing”, even if you need an occasional ERCP to clear a blocked bile duct. If you have frequent ERCPs, then that would be a different discussion.
Which one of Total bilirubin and Direct bilirubin is indicator of more trouble in liver? My direct bil is 0.3 while my total bil is about 2.5 …
Hi Jeff. Thanks for this. The itching seems to have subsided, very odd I seem to have “attacks” for 24 hour periods perhaps once a month. Guess I’ll just have to keep more of an eye on diet. We’ve just had snow in London, maybe it was the cold spell! Who knows. I haven’t had bloods done since Dec but there was no elevation so I don’t think it could have changed drastically. Thanks for the information
Hi. Sorry for my delay in responding to your post. Total Bilirubin is the best indicator of liver trouble when you are speaking of the total vs. direct. 1.2 is the highest end of normal at the lab where I was transplanted. To give you an idea of how my bilirubin tracked up and down as well as a few other liver labs, I’m posting some from the latter years of my PSC up to transplant. Hope this helps.
If you click or double click on the image it will get larger so you can read the data.
I believe direct is the major indicator of liver problems. Direct bilirubin is bilirubin that has been processed in the liver. It is normal for a small amount to reenter the blood, but large amounts can indicate that there is a problem with the liver excreting it the normal way via the bile ducts and subsequently the GI tract.
To an earlier point, itching is often but not always correlated with elevated bilirubin. We still don’t know the exact component that causes cholestatic pruritus.