Last week I was started on Ursodiol after a severe cholangitis attack. I presented to the ER with a 102.5 fever, severe right upper quadrant (RUQ) abdominal pain, and nausea. We’d treated previous attacks of pain and nausea alone, no fever. My bile wasn’t moving through my hepatic ducts due to classic PSC beading strictures.
I received IV antibiotic Zosyn while hospitalized for 5 days. My hepatologist visited me daily to review MRCP and ERCP findings. He started me on Ursodiol 300mg three times daily, a low dose. I had soft stool on it with gas for 8 days that finally improved. I was diagnosed finally in 2016 after many years of symptoms. I also have autoimmune hepatitis, AIH, and other coexisting conditions.
What is your experience on ursodiol long term and short term for your PSC?
I’m sorry to hear that you had a bad episode recently. Regarding Urosodiol, I was on 1200 mg a day for over 4 years prior to transplant. I recently had to start it again as I developed scar tissue and repeat blockages where my new bile ducts connect to my small bowel. I’m back on 1200 mg a day. Still waiting for the final word whether I have recurrent PSC, I sure hope not. One thing with Ursodiol for me though, is that it acts as a diuretic. I am up during the night about every 2 hours or so to the bathroom. During those years pre-transplant, I did work with the timing and amount I took at one time and spread it out which did help. Currently, I take 600 mg at 9 am and 9 pm. It does help thin the bile. Hopefully, it will provide you with some relief. Have you run your MELD score recently. It sounds as though the progression is picking up. Hopefully, they will list you sooner rather than later if it comes to that. We are here for you to help in any way.
PSC 2011 / Liver Transplant 2015
My MELD is 8. I don’t have urinary urgency on it, yet. Hopefully, I won’t. I just finished pelvic physical therapy to resolve that very issue, combined with incontinence. Thank you fir sharing your experience, Mark! I really appreciate this community as a resource.
Becky, my doc prescribed Urso a year to two pre-tx, and I have no idea if it helped or hurt.
During my 4 year checkup, I asked him about the need to continue taking it, and was told they recommend it permanently post tx. Again, I have no idea if it helps or hurt, but based on their recommendation, I am not about to stop taking them.
I have been on urso for several years now, and I do feel that it has improved certain symptoms while talking it. Since I started Urso, I have had less itching and nausea than I was having pre-urso.
I have not had problems with increased bathroom trips. I take 300 mg twice daily.
Diagnosed with PSC small duct in 2004. I have been on Urso for 15 years, first 1200 mg daily, went down to 900 mg a few years ago. My condition is stable and I have had no side effects from the Urso. Good luck to you.
Thank you for responding. Do you find the Urso has decreased your frequency and severity of cholangitis attacks?
I might be unusual as I haven’t gotten much worse in many years, annual MRCPs to check progress. I think the Urso has helped and it really doesn’t have any side effects. I have had 3 flare-ups, the second one is when I started the Urso in 2006. The third one was a couple years ago, but that was brought on taking Augmentin, which is on the list of what not to take, so my bad for not double-checking. Otherwise, I think it has helped. .
I am ignorant of this “list.” There are drugs that trigger PSC? Neither of my hepatologists ever mentioned this. Can you please share it?
You certainly don’t want to be taking any form of NSAID during this time. It’s always best to run any new drugs by your hepatologist. You can take up to 3,000 MG of Tylenol a day without causing further liver damage. Certain drugs affect each of us a little differently. My transplant team has always told me to run any new drug by them first. Better safe than sorry.
A quick search of top 10 drugs that can cause liver damage include Augmentin AKA amoxicillin -clavulanate, which is a commonly prescribed antibiotic. Like Mark, I now check with my liver doctor regarding any new RX to be safe.
May I ask if there somewhere a list of drugs which are not allowed when having PSC? I was aware of NSAID drugs but did not know about Augmentin. What is actually allowed when having mild pain like headache.
Thanks a lot
I can’t seem to come up with an exact list of drugs to avoid. I would ask your hepatologist and go with that. I think the biggest thing is the NSAIDs. And some medications may interact with one patient but not another that’s why it’s best to inquire with the specialist first before starting any new medicine. I wish we knew more about PSC. We are making progress and hopefully will discover a cure one day. Continue to educate yourself and your family all you can about PSC but at the same time live life to its fullest. Don’t let PSC control you, but work towards your life goals without hesitating. PSC will tell you when you need to slow down and rest, etc. Take care.
My hepatologist approved NSAIDs when I was febrile to reduce the inflammation and fever. Despite my liver values spiking during active cholangitis. I think it varies individually as to what meds are approved. My GI had me on absolutely no NSAIDS when my GERD was very uncontrolled, not my hepatologist. They worried about stomach ulceration and bleeding.
You are a fount of knowledge and experience, Mark. I never knew about Augmentin, my hepatologist never mentioned that one. A previous one said no minocycline, a fluoroquinolone antibiotic, when he thought I had IgG4 related hepatitis and cholangitis…there were other triggering drugs I don’t recall.
I’ve been in 1000mg daily for the past 2 years and 750 mg the year before. I have no side effects and no obvious symptoms of PSC while on urso. I went off urso for a short period and my liver function tests shot up i.e. ALP when from within rant to 200 (range 0 - 90) and I was breathless after short walks. I recently started on azathioprine, an immunosuppressant, and the combination with urso feels good. Urso doesn’t stop progression of the disease but improves quality of life in my experience. All the best.