Gymnast1234

[JBH2000]

I have been diagnosed with PBC and have been on Urso twice daily (500mg per dose) for over 2 months. Side effects nausea and having diarrhea at minimum 6x a day. Looking for types of food that can help with these problems. There are so many “to keep away from”, but not many to help. Rice, applesauce, fish, toast. Any other ideas? Thank you!!!!

[OdinsMom]

Have you tried taking your urso at different times or ways as in without food or with? I find with most of my meds that make me nauseated if I eat right after them I'm fine. As for diarrhea my hep had suggested metamucil daily. Sounds counterproductive but it tends to regulate-bananas may help as well. Sometimes it takes well into 6 months for your body to adjust. It can take a year for blood work to show that urso is working as well

[JBH2000 in reply to OdinsMom]

Thank you!!! I have tried with and without food. I will try Metamucil!! .. and I’ve been trying to eat some bananas. It’s a work in progress! I appreciate you taking the time to help❤️

[radidioman]

I had similar problems which drove me crazy when I first started a few years ago with URSO (also 500mg twice per day.) Please don't do anything I suggest without talking to your doctor, but here's what actually worked for me. First, STOP taking URSO for a week...see if your symptoms disappear...if so, you really do have proof (or at least strong evidence to believe) the problems are indeed URSO related. Then, re-introduce URSO but this time, do it SLOWLY...don't jump to the full dosage...say, maybe, take a half a pill (just 250mg) per day for a week, then up to half a pill twice per day for a week, then a half pill 3 times a day for a week, then back to full regular dosage of 1 pill twice a day. In other words, I think it was the shock of immediately taking a full dosage of Urso that caused my upset (and maybe yours), and by simply starting over from scratch but gradually going to the full dosage might help. I did this, it worked, and my doctor approved of my experiment. Hope this works for you too! Good Luck!

[JBH2000 in reply to radidioman]

Thank you!!! I will bring it up to my dr. Since I cut out a lot of foods- and eating more oatmeal, turkey sandwiches, etc. , it’s been better. My dr said he will cut my dose down as soon as he sees a significant drop in enzyme levels. I really appreciate your help and taking the time to suggest something new!

[PBCCarol in reply to JBH2000]

Your URSO dose should be based on weight not labs

[rderezin]

The drug company recommends taking with food ..after many years..I take right after a meal when my stomach is full.

[JBH2000]

Thank you!!

[Mimzy2020]

I experienced the same symptoms my first 1-3 months of starting Urso, 300 mg taken 3 times a day. Keeping a food diary was helpful in figuring out what I needed to avoid, which turned out to be mainly dairy products. I’ve never had any problem with dairy so was very surprised. I laid off the dairy for a short while until I got my hands on some Lactaid...that worked thankfully! I only took the Lactaid for a few months, until my body adjusted to the Urso, and now I’m back to enjoying my morning iced latte without incident.

The other thing I did initially (and still do) was take all three Urso capsules (900 mg) in the evening. That way it can do its bile thing while I’m sleeping, instead of barfing them up during the day and getting zero benefit. I did bring this up with my doctor and he approved. He also said the Lactaid was a good solution to the dairy issues and that he can’t enjoy lasagne without it.

Oh, I also remember reading posts from several people who said they were able to switch to a different Urso manufacturer. I take pink and white capsules from Lancet (I think that’s the name). I never switched brands because I was able to work out the food and nausea issues on my own.

Lastly, about not being able to eat much and boring menus. About a year or so prior to learning I had PBC I began moving towards a Mediterranean diet because I was concerned about high cholesterol/triglycerides and was trying to lose some weight. My kids were teens then and not to finnicky about food, so changing our family diet wasn’t tremendously difficult. As a Mom I’ve stood by the motto, “eat it or starve", lol. But, I found out that I actually like to cook and my kids like what I make. For any new recipe I try, we either decide to change the recipe a little and try it again or ditch it completely. I started printing out the recipes we tried and liked, added our notes to them them, and began organizing them in a 3-ring binder. If you’re interested, there are quite a few really good internet sites for Mediterranean (as well as Dash) diets where you can learn more. If it’s not your thing, that’s okay, I just wanted to bring it up because it has had such a positive effect on my health. I was stage 3/4 with cirrhosis when diagnosed with PBC, so cutting out saturated fat from my diet has been a big priority. I won’t give up my iced latte though!

I do hope you get to feeling better soon. Those early days when I started Urso totally sucked. I too spent most of my time in the bathroom, uggh! I also stocked up on Beanos, antidiarrheal tabs, and Lactaid, lol. Believe me, I for sure know how you feel in that regard but be confident and know that before too long your life will be back to normal. I will be seeing my doctor about the same time you see yours. I will be hoping the best for you.

[JBH2000 in reply to Mimzy2020]

Thank you! I appreciate you taking the time to educate me a bit! I have further blood tests next month - I’m hoping they will drop me to 300 mg twice daily. I would like to see if I can take both at night. Thanks for the heads up on Mediterranean Diet. I cook rather healthy - not a lot of fats, salt and processed food.Enjoy your day - be well!

[ManhattanNY]

I would suggest you get a fructose test. My dad was constantly having diarrhea and they tried forever to figure out what it was. Finally, he went to a doctor who knew in 5 mins. what was wrong: fructose. The solution was to eat Smarties candy at the start, during, and after your meal. There is also something called Fruct-aid from Germany you can buy on Amazon that's stronger than the smarties. Something about the glucose balancing the fructose. It couldn't hurt to try a roll of Smarties during a meal. If it seems to help, look up foods high in fructose. Just a thought. His started all of a sudden for no reason, so might be coincidence about the Urso. I take Tudca instead of Udca-(ursodiol), by the way.

[JBH2000 in reply to ManhattanNY]

Thank you! Never heard of anything like that!

[ManhattanNY in reply to JBH2000]

Yeah. We never had either. Who knew! But the change was immediate and after several bottles of Fruct-Aid, he only has to take it occasionally. Good luck in discovering what the cause is.