Has anyone had any experience taking the drug Ursodiol?

Posted by whipple2232 @whipple2232, Aug 20 11:43am

I am looking for feedback from anyone who has taken Ursodiol. My oncologist prescribed 300 mg twice a day for one month in the hopes that it will help lower my liver panels before I have an MRI next month. I took one capsule with food yesterday and felt awful! My pupils were dilated, I was dizzy, had chills and tingling in my hands and feet. I did not take a second dose last night. Is this medication based on body weight? I only weigh 95 pounds. I will call my oncologist today to report my bad experience yesterday. I was just wondering if anyone else has had any effects, positive or negative, with this drug. The only other medications I take are Creon and a PPI.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I’ve been taking it for more than a year for PBC and didn’t have any side effects. Praising my Lord Jesus! May the Lord touch you with His healing grace and His love.

REPLY

The dosage is 500 mg twice a day.
I pray before I take any medication, asking the Lord to bless the treatment and praying for His healing touch.
God’s blessings to you.
Oh, I only take Milk Thistle with it, not with but in between the two dosages of Ursodiol. Your doctor needs to know if you are taking some other medication which may be affecting your treatment.

REPLY

I take it for PBC, a bile duct liver disorder. My doctor had me start with one at night for a few days and then add on morning dose. I had heartburn only that very first night but no other side effects since. The medicine just thins the bile and shouldn't create side effects. I've heard of the medication not working well in some people, but rarely creating side effects. It could be the fillers in the brand that's creating your symptoms.

REPLY
@sb4ca

I take it for PBC, a bile duct liver disorder. My doctor had me start with one at night for a few days and then add on morning dose. I had heartburn only that very first night but no other side effects since. The medicine just thins the bile and shouldn't create side effects. I've heard of the medication not working well in some people, but rarely creating side effects. It could be the fillers in the brand that's creating your symptoms.

Jump to this post

@cb4ca how long have you been diagnosed with PBC? It’s been a year since I was. Taking Ursodiol twice a day morning and evening with the meal. Also, taking milk thistle in between once or twice. The liver enzymes were normal for a year until recently got higher but not much; I have joined the PBC email list but there’s no much information on what and how people live with it, especially working full time.

REPLY

I was recently diagnosed with PBC by Gastro Dr.- just by one blood test. I was given Ursodiol 300mg to take 3 times daily. I am very worried because I have so many drug allergies and usually bad side effects. It seems like a lot to start out with and wondering if I should go to a Hepatologist for a second opinion.
Appropriate any advice. I also have a thyroid disease but that seems better for now.

REPLY

Do you know the name of the blood test used to diagnose you? In reality there are 3 test criteria they use to diagnose. One is sustained ALP or Alk Phos for at least 3 months without any other cause. The second is a antibody test called AMA and possibly ANA too. It's this test that I'm wondering you had that was positive. The third criteria is positive hepatic histology which is mainly a biopsy though it seems to be used less often when the diagnosis is more straight forward. The other liver enzymes are ALT, AST and sometimes as a seperate test is GGT.

The medication Ursodiol basically thins the bile so it runs more smoothly through the damaged bile ducts which is the basis of the disease. The dosage is based on weight and not the level of the disease. I take mine just twice a day and I've seen a lot of people who only take it once a day. It has a really long half-life of 3-5 days (how long it's active in the system) so I can easily see why you would just take it once. For the most part is an easy drug to take and while some people can get side effects they are generally mild and go away once the body adjusts to the medications. For others that struggle more, it could be the fillers in the generic version of medication their pharmacy uses and once a different brand is used, they won't have side effects. Like my medicine is a capsule but other people have tablets.

The best kind of doctor is a hepatologist as you mentioned. They specialize in just the liver so are more knowledgeable and certainly more experienced in treating liver disease. If you have one(s) available to you, I would recommend seeing one as you can trust they will treat and monitor you with a high standard and level of care. Have you had a Fibroscan or wave elastography yet? These tests measure the level of stiffness in the liver from scarring over time. If it was caught very early, hopefully there's not a lot of scarring. The worst scarring would be cirrhosis.

It's not surprising you have another autoimmune disease as these tend to come in groups. PBC is considered an autoimmune disease. It is much more prominent in women than men too, just like all autoimmune diseases across the spectrum.

I wish you the best. I hope you'll find the disease easy to control.

REPLY
@camry73

I was recently diagnosed with PBC by Gastro Dr.- just by one blood test. I was given Ursodiol 300mg to take 3 times daily. I am very worried because I have so many drug allergies and usually bad side effects. It seems like a lot to start out with and wondering if I should go to a Hepatologist for a second opinion.
Appropriate any advice. I also have a thyroid disease but that seems better for now.

Jump to this post

@camry73, I hope you saw the helpful post from @sb4ca.

You might wish to speak with a pharmacist if you have concerns about possible reactions or interactions of this new drug. How are you doing on Ursodiol? Did you get a second opinion?

REPLY

I’m still waiting on second opinion. Haven’t taken any Ursodiol yet.

REPLY
@colleenyoung

@camry73, I hope you saw the helpful post from @sb4ca.

You might wish to speak with a pharmacist if you have concerns about possible reactions or interactions of this new drug. How are you doing on Ursodiol? Did you get a second opinion?

Jump to this post

I just got a call from a Hepatologist. I will see her in a few weeks for second opinion.

REPLY
Please sign in or register to post a reply.