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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Anyone taking obeticholic acid? If so, concerns/results/stories to share?

Considering this medication as a clinical trial, curious to know if anyone else is currently on it and if there are any stories you would be willing to share.

Thanks!

It is double-blind study, so patient and doctor do not know if they have placebo or oca…

Yes, it is double blind. I'm curious to know if anyone else has already tried the medication and if so, if there were any side effects, positive or negative.

Always type the name of the drug followed by "SIDE EFFECTS."

Many stopped taking it because one of the side effects is SEVERE ITCHING.

YUCK. I would not take it. NEVER.

I'm not a guinea pig. I've found diet is the key.

Mona

Mona, what type of diet are you on? How is that working for you

Mona, did you participate in trial yourself or is this rumor only?

If severe itching occurred, maybe it is oca effect…though nobody knows since it is double-blind

Pruritus, jaundice, and fatigue are known side effects of obeticholic acid. From the PBC trials, roughly twice as many patients in the obeticholic acid group suffered pruritus. Pruritus was generally worst after starting the drug and improved over time (~6 months).

From the succesful oca pbc trial phase 3:
“Pruritus, generally mild to moderate, was the most frequently reported adverse event associated with OCA treatment (placebo: 38%, OCA 10 mg: 68%, OCA 5-10 mg titration: 56%). Eight patients discontinued due to pruritus: none in the placebo group, seven (10%) of the patients in the 10 mg OCA group, and only one (1%) of the patients in the OCA 5-10 mg titration group. Apart from pruritus, the incidence of adverse events was generally similar across both OCA and placebo groups”

In any case, chance of stopping my psc progress in exchange of mild to moderate pruritus is no brainer.

New treatments and cure requires clinical trials and volunteer patients. I’m happy that not all patients are selfish lazy a** but willing to do their small part in helping to find the cure. I volunteered for one locally available trial, but I was rejected (exclusion criteria).

Thanks all - I was hoping for specific, personal experiences with the OCA. Guess I'll be the one posting as I'm pretty sure it's a "go" for moving forward. Had a very informative meeting with the Doc, will keep everyone posted as to (hopeful) progress.

My liver doc asked if I would be interested in participating in a clinical trial, and I am pretty sure it is for this drug. I saw his name as one of the participating researchers.

He hasn't called me yet, so I do not know what stage the study is in at the transplant clinic.

But it could prove interesting, so I told him yes, I'd participate.

Jeff

OCA seems promising. It got FDA breakthrough designation and priority handling for new drug application for other liver disease (pbc and/or Nash). One of the oca trials was halted early because of the clear success.

Time will tell if this works for psc, but I’m hopeful.

OCA clinical trial (phase 2) for psc is scheduled to end in 2018.

Looks like I will not be a candidate. Their study has as an exclusion factor those with a history of bowel resection, which knocks me out. That is disappointing.

Jeff