Hi everyone, new here and recently diagnosed with PBC. My dr says I’ve probably had it since 2019 but that there’s no sign in my bloodwork of actual damage yet. I was prescribed 1000mg of urso and I’m also seeing a naturopathic dr who gave me some supplements, including milk thistle.
Is urso generally well tolerated and is there something I can do to help curb potential side effects? I have a lot of health related anxiety and taking medication is always a challenge.
Thanks for your help
Just take the urso and don’t worry about the potential side effects until you actually have issues and then your doctors will help you address them.
Ursodiol is generally well tolerated; uncommon side effects can include fatigue, nausea, headache and weight gain. Less common, but potentially severe adverse reactions include hypersensitivity reactions and depression.
I’ve been taking Urso for nearly two years, no noticeable side effects and it has brought my enzymes down to normal levels. We are advised NOT to take milk thistle.
Why not to take milk thistle?
I’m not sure but ask for advice. X
Urso is well tolerated by many. Don't be concerned. Take it as prescribed. Good luck!
I have been on URSO since 2006 without any adverse side effects. For those of us with PBC it is a life saver. There are many specialists who do not recommend the use of milk thistle. The sooner you start taking URSO the better your life expectancy. Try not to worry, come back to us and let us know how you get on.
best wishes
Try not to worry too much, urso is generally well tolerated but like any medicine can cause side effects in some people. I remember having a few gastric side effects but I was started on maximum dose of 3000mg at the time as they were desperate help me and baby when I was pregnant but the side effects soon disappeared, you can also start on a low dose and build up if your GP allows it.
You’ll probably find that there aren’t many PBC patients who take naturopathic remedies to help their condition as these are generally seen to do more harm than good, so don’t be surprised if your DR disagrees with you taking supplements and advises you to stop.
I take it and have no side effects, bloods all back to normal.
I know you have health anxiety, and I'm sympathetic towards it, but your logic is off here. Your PBC doc is a specialist in your disease and Urso is an effective medication for slowing the progress of PBC. The naturopathic supplements probably won't help and may even cause harm, the naturopath is not a PBC specialist. My GP won't even interfere with my PBC meds, as she doesn't know enough about them.
The best thing you can do for your health is take Urso. I had a few side effects when I started it, but they went away after a week or so. That seems to be a pretty common experience, as is having no side effects.
I know anxiety isn't logical, and I hope I haven't offended you. Best wishes x
I've had no side effects at all. Please take them. As you don't have any damage yet then starting the urso early means you could prevent your PBC from ever advancing to the really ugly stages. Try to think of it as good luck that you've found and can treat this now.
I have been on it for 8 years with no side effects and it brought my numbers down a lot. And I too was advised no milk thistle.
I take it with no side effects and I am normally prone to side effects
Hi there. I understand how u are feeling. I can only say that it brought my alk down I highly suggest u reach out to robert PBC foundation. He will talk u through this. I totally get it. I wasn’t going to take it. I don’t mike meds. I’m very functional medicine oriented - however it’s the Urso that brought the numbers in line. I don’t know what I would have done without Robert - and of course our Collette. - 🦋
I am an 82 year old male diagnosed with PBC in February 2019— confirmed with liver biopsy. I have been on 1000 MG Ursodiol since then with excellent results. My blood work quickly returned to normal. I have no known side effects. Supposedly, I am at stage 3. The projection is that I will have a normal lifespan.I just now returned an hour and twenty-five minute, fifteen mile bike ride, loving every minute of it.
I say, go for it!
Best,
Don
That seems to be a low dose of URSO- it is supposed to be based on your weight?
I have read that it is supposed to be based on weight—-as are many meds—-but the 1000 mg (500 mgs twice daily) is producing the desired result. I am not medical, but my guess is that the dosage depends upon several variables, which is what our medical advisors do, hopefully.
I was diagnosed with PBC in 2019 and put on 1000mg Urso per day. I was also reluctant about taking it but have had no side effects and my numbers at my annual check up last week were all within good range again. I have thyroid issues and weight gain and hair loss concerns were my primary worry with urso - especially as I had lost a lot of hair leading up to my PBC diagnosis - I can honestly say that, since taking urso, I have gained just 2kg (and that was more down to lockdown and reduced activity) and the hair I lost pre-diagnosis has actually grown back again. Try and focus on the potential benefits of urso as opposed to side effects that could possibly affect you, but in all probability might not. As far as the naturopath and milk thistle, I would say that could do more damage than urso. My doctor advised me not to take any over the counter supplements as they can affect the liver. Good luck 😊
Adding to the discussion, I do not take any supplements without running it by my hepatologist first. I currently take: a multi vitamin, vitamin D, fish oil, and calcium.
I felt exactly the same way, but felt I had to give in and take advice given the seriousness of the problem, I was prescribed a cheaper version of Ursodeoxycholic acid with colours and additives. I asked the pharmacist to change this for a healthy option and am please to say I am on Urdsofalk and have not experienced any side effects. I phoned the company direct and got my questions answered as I have not found my GP to have any knowledge of PBC. I hope this helps.
Taking a new medication, especially when its for life is naturally stressful for most people. I had no trouble with Urso and it certainly brought my numbers down to normal so all good here. Try not to worry because that brings it's own problems x
Diagnosed in 2005 but probably had it at least 3 years before. I take 750mg daily. Initially my stomach found it a bit difficult to deal with but within approx 2 months settled down. Unfortunately classed as a non responder so basically my condition/blood levels have never improved and are always very eradic
My consultant told me always to continue to take them regardless as even though no improvement the URSO would to a certain degree hopefully protect my liver. With regards to Milk Thistle he said there is no evidence this has a positive impact and if it was that simple specialist would be recommending this world wide. In fact he strongly advised against it main reason being if patients take natural meds along with prescription it is extremely difficult for the consultant to know and monitor any variations in your condition.. Stay safe & well. 😉
Thank you everyone! I started taking it 2 days ago and so far so good 
I have been on Urso for about 5 years. It was the best thing for me. I have never had a side effect, my horrid debilitating chest pains stopped, vomiting stopped and all my liver functions were normal for the first time since the 80s. How long this will help me we do not know but my gastroenterologist
has said, as long as it is working you are good. I realize others have had side effects I was a lucky one I suppose. I did NOT have the hepatitis part. Which causes possible other issues.
Thanks!
Has anyone experienced mouth sores with PBC or ursodiol? My entire left inner cheek has white, painful sores and I have a headache and pain in my ears for 5 days now.
I called my gastro dr office and the nurse told me take a little Tylenol (2 a day) and that only the headache was a side effect.
I’m just in pain and miserable so if anyone has any experience or advice, especially relief for my cheek, that would be great
I had something similar in my mouth although not to that degree. I had thrush from taking an antibiotic and steroid. My dr prescribed Nystatin. You can rinse and swallow or rinse and spit. They sometimes recommend swallowing in case it is also in the throat.
Thank you for the response. I just left the walk-in clinic. They are putting me on an antibacterial med and prescription strength rinse.
Good to hear. Hopefully that will take care of it. 😊
taking any new medication can be scary.. but know that once a diagnosis is made (for most done with elevated liver enzymes and a positive AMA blood test) it is crucial to start Urso as soon as possible. Urso helps maintain maximum liver function and keeps bile duct cells' damage in check. Urso has been proven to the first line of treatment for PBC. Everyone reacts differently with PBC as well as Urso. Don't anticipate problems. Many (myself included) have taken Urso for many years with no problems at all.
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