urso and pbc

I have been on urso for 14 yrs. it went from $55 for a 3 mo supply to $800 and that's half price! My dr took me off urso for a month. my test results over doubled! GGT went from 360 to 689 and I started feeling sick to my stomach after eating sometimes and body aches. I also started itching of and on (never before has this happen). He says the medicine has been proven not to help PBC! He wants me to stay off of it for two more weeks! Has anyone had this problem or heard anything about urso not working? I don't think you can just cold turkey a med after taking it for 14 yrs. Help!

16 Replies

  • May I ask what country you live in? My doctor is getting ready to prescribe me urso as well and if it is not going to help, why bother? I luckily have no physical symptoms thank God!

  • US. I had no symptoms either and I was diagnosed almost 15 yrs. ago. My dr said the studies show that urso just shows lower lab results and has not been proven to help PBC. I will give it two more weeks and see how I do and have more lab work done and see what the doc says. The way I feel now I will pay the price for urso if it makes me feel better.

  • Wow, that is crazy! I too live in the US. So basically your doctor says the urso is just for bloodwork purposes? I don't know about that... I'd get a second opinion. Also, why is it going up so much? That is insane!

  • I am in the US and I'm concerned about my prices after January too. My insurance deductible is met right now so I pay 10.00 per 30 day supply. But after January, I'm not sure. I've seen everything from 49.05 with a discount card all the way up to 300 for a 30 day supply. As far as a doctor taking you OFF Urso? I don't know if I would be sticking with them. Every medical study and text I've read says that URSO is the ONLY thing that will help us. It doesn't help with everyone, mind you, but it appears it was helping you. Script prices here are out of whack, to be sure. I will call one pharmacy and they will say its 150.00 cash price and another says 700 and thats for 30 day supply.

  • Hi I decided to stop taking urso, and to be honest I had symptoms before during and after, I haven't noticed any change, I've looked into this and apparently urso doesn't slow the progress of the disease down, just helps with symptoms. I have mailed a professor at the university who is researching pbc, and have offered myself for any upcoming trials, pbc needs more recognition and awareness

  • Doesn't really make any sense. I've been told and have read that Urso greatly helps slow the progression. Surely the improved lab/ blood results mean something?

  • Urso definitely helps especially if you are in the early stages..... It probably means you die with PBC rather than from it! In the later stages I agree the effects of urso is more limited, but it isn't just about blood levels, and needs to be considered on an individual basis.

    I wonder why the cost of urso in the US has increased? I have no idea how much it actually costs the nhs in the uk, would be interesting to know.....

    Good luck


  • Hello louf.

    I do know how much urso is here in the UK where I am. You can easily find the costings online. I have had the headache since diagnosis Dec 2010 by GPs telling me how much urso costs and I've even been fobbed off with generic last yr when the one I was taking was withdrawn. I found I was experiencing problems that persisted with the generic and managed to get the GP to write me a script for a brand that I had managed to talk a pharmacy into handing over months before (until they decided I had to have generic as that is how the script had been written all along).

    If you check on this link for MIMS it tells you how much our urso costs for the NHS.

    I stand my own opinion here that life is all about money but if a patient didn't have ursodeoxycholic acid now it is used for the treatment of PBC would that patient ultimately start costing the NHS more every time that patient may require a hospital visit for any symptons that started to occur?

    I had the argument with the first GP back in early 2011 and I'd only been on urso for a few mths. He was only going to give me a script for a month (which I keep getting told is 28 days!) to which I said he need not bother if that was the case as I was not accepting due to th e fact I've always had to contribute to the cost of the NHS prescriptions and hadn't actually had a prescription from a GP from 1999 until I was diagnosed with PBC in 2010. I have managed to maintain a 3 months supply but I have seemingly hada to argue my point across over several occasions here.

    I did write to my MP last year regarding this 28 days surgery ruling for tablets (as mine are packaged in 15 day supplies so 28 days was silly to me. I got a letter back with a copy for the Health Minister and it stated that surgeries had never really been given a cap for how much they can prescribe on a repeat prescription.


  • Usro helped my bloodwork and my symptoms. My doctora all agree that is slows progression. I think it makes sense since the liver acids themselves can cause further damage, if they are lowered, damage is slowed down. Either way, why risk stopping it if it was proven to keep your levels under control? Id rather take a med that could maybe possible not help much, than stop taking one that could be keeping me from getting worse.

  • Yes Mcsv.

    Although I am still that bit sceptical I keep on taking the urso due to the fact that it adds additional bile to our system and helps break down fats. Due to us not knowing exactly how our bile ducts are (mine looked pretty much all intact and clear according to t he hospital consultant who I saw just priior to diagnosis as he had the scan in front of him), the urso does start getting to work via our stomach and jeases the pressure off our livers. I think this is where it comes from that it can slow down progression as the liver is less stressed.

    I do think that for some of us we'd never progress too far with PBC if we didn't take the tablets but it's a case of we do not really know so we don't want to take the risk. I know that I was itching like crazy during 2010 but over time with urso (started urso Dec 2010) it has started to recede somewhat and it doesn't seem as bad aas it used to be. In the early days prior to being informed I had PBC I remember stamping my feet during the day when out and about as my feet all itched, something that they do not do anymore at all in the day. I tend to feel my feet start itching late at night. It is only the last few mths that I seem to have got myself into a routine of going to bed just as the itch starts feeling more prevalent and then of late even if I've woken up a couple times in the night it has been short-lived, I've returned to sleep so practically missed out on the night-time itching. I do think that without urso this wouldn't have happened for me. No guarantees things will stay that way but for now it is by far better than it was during 2010.

  • Usro helped my bloodwork and my symptoms. My doctora all agree that is slows progression. I think it makes sense since the liver acids themselves can cause further damage, if they are lowered, damage is slowed down. Either way, why risk stopping it if it was proven to keep your levels under control? Id rather take a med that could maybe possible not help much, than stop taking one that could be keeping me from getting worse.

  • Hello jpickle.

    Well I am in the UK so cannot reply with regards to the costings of your urso as we are in £s here as you already probably know.

    I have been sceptical about urso since starting to take it at PBC diagnosis Dec 2010. I have had LFTs that have gone down at the start then up a bti and then down like a wavy line on a graph. I am currently on the good side with LFTs.

    Now I am not sure that suddenly stopping urso would be of a major problem due to the fact that I've always seen it as a supplement as opposed to an actual medication. I say this as we are basically adding a component that is present in our bile acid. Basically it just adds more bile to our system to improve the bile flow and aid better fat digestion that we were probably sturggling with prior to diagnosis.

    I do think that taking urso can as I say 'paste over' the actual LFTs to give a better reading.

    I do find it a bit bizarre that you have been taken off urso though as I am certain the majority of us taking urso and still doing fine now wouldn't necessarily so without taking it. hence I continue to take mine despite loathing the fact that I get by these days with a few urso tablets daily.

    I started itching about 9mths prior to being informed I had PBC in 2010 and still itch so for me if I was to stop taking urso I wouldn't actually notice there but itching is a sympton of PBC. Some experience it, others don't and it is said it is of no gauge at all as to how we are actually progressing with PBC.

    You stating your doctor isn't convinced urso is for anyone with PBC so I would in your situation ask to be referred to another doctor and take it from there.

    Best Wishes.

  • Ursodiol is expensive in Canada too but not $800.00 ! Prescriptions filled at Costco are the cheapest I have found. Also this drug is covered by pharmacare in BC. . The cost is less than $100. usually for 3 months and is partially covered by the provincial health care called pharmacare.

  • Hi All, Im on my first month of diagnosis for PBC and now Sjogrens, Im taking Urso.

    previously I have had minor symptoms of Sjogrens but they were minimal. Now, they all came back at once since taking Urso. I was dismayed to find that Urso contains sodium laurel sulfate - a garage floor cleaner! its something I have avoided in my shampoos and toiletries for years. I am preparing to do the Anti Inflammatory diet and find out what nutrients Im lacking and see if I can slow the progress down - I know it works because I had two years of my enzymes going up and down before diagnosis - due to being on diets and coming off them. Now, its diet for life I think! I live in Ireland

    not sure how much Urso costs here.

  • If you haven't already, go to another doctor - a pbc specialist. Find a transplant center in your area and have your primary care physician refer you. You need GOOD answers from a QUALIFIED doctor!

    I was first diagnosed in 1998 and have been on the UNOS transplant list through the Mayo Clinic in Phoenix since 2007.

    Good luck!


  • I was diagnosed with PBC 2 years ago and in Canada it's very hard to find a doctor or specialist who knows much about this disease. I had ulcers 20 years ago and they took out my spleen, appendix, gall bladder, smaller intestine and part of my stomach. The doctors told me that a liver transplant wouldn't work because I was missing the parts that would help. They started me on Urso and Rabeprazole to cut down the bile. Evidently the bile was eating into my windpipe while I laid down.

    Needless to say I felt like a zombie and was shocked because I had never heard of this disease and never drank. I usually eat very healthy. When I started all this medication along with an antidepressant, there were times I couldn't even get out of bed. My life had gone from being active and social, to being in my bedroom 95% of the time. I couldn't drive, my daughter would have to cook for me, etc. The itching drove me insane. I told the doctor I would give it six months which I did.

    Now I have taken myself off all the medication and I feel great. I refuse to do any more tests or have all those tubes of blood taken. I am now 67 years old and I don't know if my liver is getting worse, but I refuse to live like that. I still get exhausted at times, but I listen to my body and lay down when I feel tired. Other than that, I am great.

    My doctor has asked if when it gets bad if I will see another specialist. I have told him under no circumstances will I go through all the xrays, ultrasounds and bloodwork again. I was feeling fine before the diagnosis except for fatigue and itching. The itching has been controlled by Lyrica and besides Vitamin B shots and taking Vitamin D, I am great.

    I know this isn't for everyone, but I could not live the way I felt on Urso. I don't believe I am getting worse and I think that helps my frame of mind. Whatever it is, I feel wonderful.

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