I know it’s not wise to trust everything you read on the internet… but on a few other forums I’ve seen people say that urso makes things worse for PSC rather than better…
I’m on 250mg, 2 capsules a day.
My liver function tests are now completely back in normal range (yay!) I was taken off it for two weeks to see if it was causing some other symptoms and during that time had blood taken and my ALT and elevated once again. Went back on it, they went back to normal.
Surely this means the medicine is “working”? Has anyone heard anything about urso just masking symptoms or even making things worse? Would appreciate any insight that has been taken from doctors…
I am taking Urso too. My GI says “for life”, meaning after transplant as well. I take the same dose as you do, but haven’t had blood work until yesterday and I’m curious about what the numbers will look like. My understanding is not that Urso is bad, but that it may give a false sense of security because the numbers often look great while the PSC is still raging on inside of us? One of the more seasoned PSCers may be able to weigh in more, but that’s what I’ve understood.
Littlebit,
Hi and thanks for your post. I’m glad to here your labs are back in normal range. The purpose of URSO is to thin the bile so that it can flow better through the diseased bile ducts. It is a quality of life issue that URSO helps to maintain until the disease progresses to a point that even it will not help. I was on 1200 mg of URSO a day for 4 years prior to transplant and it did help maintain lower levels for me although mine never came back down into normal ranges. As one other poster said, it can give a false sense of security that your liver is healing and the disease might go away, but that is not the case. PSC is a progressive disease and over time it will get worse. Now keep in mind, that time for everyone is different. We’ve got folks on this and other forums that have had PSC for 20+ years and still have not needed a transplant, whereas folks like myself and Jeff were around 4 years from diagnosis to transplant.
At this point I’d say enjoy those normal lab levels and just go on with your life living it to its fullest. PSC will get your attention if you need intervention and just deal with it then. Don’t let PSC stop your normal life, your body will know when you need help. I hope this helps to ease any fears you might have. Again, so glad you are getting good labs being on URSO.
Hello Littlebit,
to my knowledge and experience URSO is safe BUT: it does not heal, it just keeps the liver at its present state (to some extent), and things go worse faster without it.
So take it!
Regards
Rippi