PBC and also suffering with Pancreatitis

[Michcook54]

I was recently diagnosed with PBC (November 2022) and also have stage 2 liver fibrosis. The dr had prescribed Ursodiol and I had a bad reaction and can no longer take it. Since then, I have been prescribed Ocaliva(Obetecholic acid), has anyone had great results with Ocaliva? Also, I have been suffering with bouts of Pancreatitis since 2011 , does anyone know if there is a connection between the two? I have asked my regular GI doctor and he said that he "didn't think so". I have my first appointment January 3rd at a Pancreatic foundation, so I hope I will get some answers.

[BRT15]

I have been taking ursodiol since 2008 with no bad reaction so far. I do split the dosage and take some in the morning and some at night to prevent stomache upset. My doc tried the Ocaliva, but took me off when bilirubin started to rise. I don’t know if there is a connection between PBC and pancreatitis, but it seems to me that PBC is a harbinger of multiple digestive issues. I hope you get answers to the pancreatitis concern soon.

[Michcook54 in reply to BRT15]

I am going for further testing with the Pancreatic Foundation. I have appointments already set up.

[Steinie]

Good morning! Ursodiol took awhile for my body to adjust to, but it got me through the 1st 10 yrs after my diagnosis. Then about 2 yrs ago my GI doc referred me to a Hepatologist, who prescribed Ocaliva. (They nearly had to do cpr on me when I heard the cost. Because I’m on Medicare, grants and other financial assistance are not available to me, or anyone using “government insurance” 😖) I get my Ocaliva from a “Canadian” pharmacy for less than $100/month. 💃🏼💃🏼💃🏼💃🏼(My happy dance) After one year on it, my fibrosis went from stage 1 to 0. I hope you will also see great results!

I’m not sure what else I can tell you. I’ve never communicated with anyone on this site before, but I do think it is secure, and that shared info can be helpful. Feel free to reach out if you’d like.

Wishing you a healthy and happy new year!

Debbie (“Steinie”)

[Lawyers in reply to Steinie]

Great to hear! What method did they use to stage you. Fibroscan is not very reliable. MRI with elastography is what Mayo uses.

[Michcook54 in reply to Lawyers]

They used bloodwork, Fibroscan and MRI with Elastography AND a liver biopsy.

[Michcook54 in reply to Steinie]

That is great to hear, I to am hoping to get great results from taking the Ocaliva. Thank you and I wish you a happy and healthy new year.

[Mcd04]

Hi Michcook54

I wasn’t getting the best results with Urso so consultant put me on ocaliva. It has worked for me , now I am on both which has given me better results.

I suffer a lot from nausea and vomiting but I am also on azathioprine cause I have autoimmune hepatitis as well as PBC,not sure which medication is making me sick but after trying many anti sickness tablets levomepromazine has made a difference.

Stick in there and hopefully it settles and your bloods come down .

Are you on the PBC page? I have read on there before of people that take any of the medication, maybe you will find someone who has similar reaction as you.

[Gotpbc]

Sorry you are not having a good time.. I also didn't respond well to urso. However I did a drug trial and now it seems urso is ok. The OA is very effective. The two diagnosis affect one another ever so slightly. Wait to see the pancreatic Dr.. good luck. Hope you feel better soon

[Michcook54 in reply to Gotpbc]

Thank you for your response. I was kind of thinking it either affected one another or overlapped in some way. I had an appointment on January 3rd at the Pancreatic Foundation and the next steps are more precise imaging and will go from there with a plan.

[FrogMom]

I have been taking Ursodiol since 2012 when I was diagnosed and haven't had any reactions but a couple years ago my numbers started going up. My doctor and I briefly discussed Ocaliva but we went with adding Fenofibrate instead. Even though I can only tolerate 48 mg daily due to muscle pain at higher doses, my numbers have been normal now for a long time. I am still on the Urso but adding the Fenofibrate has made all the difference.

Hope you get some answers soon regarding the pancreatitis.

[Michcook54 in reply to FrogMom]

This is all new for me, and kind of a hard pill to swallow and definitely overwhelming, seems that since the pancreatitis, everything else along with it has gone downhill. I believe I am on the right path to getting answers as I now have all the right doctors that I need. I hope this year will find you healthy and happy.

[gwillistexas]

yes, I had a very bad allergic reaction to URSO. I was on capsules and had to sto after 10 days. That was 2017 and I have been on ocaliva since then. I have nothing but positive to say about ocaliva. My Alk Phos dropped quickly. Every now and then it will rise but always comes back down. I wish you good results with it.

[Michcook54 in reply to gwillistexas]

Thank you!

[Yankeerose3]

I been taking ursodiol since biopsy confirmed PBC Nov 2013. I get an ultrasound every 6 months which showed I had a cyst on my pancreas so when it got bigger dr went in and drained it fearing pancreatic cancer but it wasn't however I have to now be tested to be sure it doesn't turn to cancer. I was prescribed ozempic for diabetes which the side effects could cause pancreatic issues. So feel that's reason not because I have PBC but diabetes. I'm now told I have intraductal papillary mucinous neoplasm per EUS. Plus, being treated for EPI. I would love to know what the dr tells you January 3rd. Praying it's good news. Please keep in touch

[Michcook54 in reply to Yankeerose3]

Thank you for your response. Everyone has been so helpful with sharing their experiences and I find that wonderful. I saw the Dr at the Pancreatic Foundation and we are going to be doing more intensive and precise testing as he feels that their may be some fluid retention going on in the pancreas as well as a Sphincter Oddi Dysfunction. I go January 21st and January 26th for the imaging. Meanwhile, there is also a hiatal hernia issue along with an esophageal issue as well. I feel like a train wreck. I hope that 2023 finds you happy and healthy. Keep in touch.

[Yankeerose3 in reply to Michcook54]

Totally understand that. Best wishes and yes, please keep in touch. 🙏