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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Interesting (and alarming) update for those on Ursodiol!


#21

I started Ursofalk (same as ursodiol) about 2 months ago and just had a follow up with my doctor, my recent bloods are showing a significant drop in all LFT tests, they're the lowest they have been in years.

Works for some I suppose


#22

I've been taking 1200 MG of Urso for years now. My quality of life wouldn't be the same without it. That's another reason why I have preached that if you have PSC you need to get under the care of a Hepatologist that is Very familiar with PSC. The average GI doctor just doesn't have the experience of dealing with this very difficult disease. I would encourage you to look into this further before finalizing a definite opinion on Urso. Otherwise you may find the road ahead to be quite difficult physically without this medication. It has certainly helped me and others find a better quality of life. The very best to your ongoing care.


#23

Wow, folks are all over the place on this topic. I took a look at some of the most current research I could find (2015). I found this article on the Natn'l Center for Biotech Info titled: Current research on the treatment of primary sclerosing cholangitis- provided courtesy of International Advancement Center for Medicine & Health Research Co. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322589/

One of the statements says, "In fact, the safety of long term use of high­dose UDCA in PSC patients has been questioned, as it has been associated with increased rates of serious adverse events and, more recently, with the development of colon cancer. The American Association for the Study of Liver Disease (AASLD) recommends against the use of UDCA in PSC patients.”

Granted, this is only one article... but it seems something to consider when making a decision about it. The dr. that my partner was seeing was a part of another study in 2009 : High-dose ursodeoxycholic acid for the treatment of primary sclerosing cholangitis . Yes, it is an "older study" and about high doses, but overall did not find much supportive evidence for effectiveness of URSO in treating PSC.

For my partner, we have decided it is not for him.

Also, if you are interested I saw that there is recruitment for an ongoing Clinical trial (2010) for the use of URSO in treating PSC https://www.clinicaltrials.gov/ct2/show/NCT


#24

Hi everybody,

I´m on Urso for three years now, and it helped definitely. This year the “regular” flare-up in spring did not show up. I take low dose Urso; a good friend (medical doctor, PhD in Chemistry and 40 years in pharmaceutical research) had warned about high dose Urso — more is not always better! — and suggested as dose 10 to 12 mg per kg at most.

To support my digestion I take PANGROL, seems to improve my situation.

Regards

Rippi


#25

My MD stopped prescribing Ursodiol 3 years ago.

Adrian