Hi again hope everyone is doing good today, I wonder if anyone here on URSO has not felt well after taking it for a couple of months?
I have had cold like symptoms and cough more asthma flares swollen tight feeling in neck and throat and belly pain distension right upper belly pain where the liver is and hot and cold chills and blurry vision. My liver dr. Said she doesn't think it's related to my liver and referred me to my internist yesterday he said could be the URSO since theses started after taking it and these symptoms are listed as side effects in the literature for URSO...
Thanks ahead for your thoughts ....
Sick here 😔
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Michiganpbc
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I did. I stayed on it a year as HEP denied any of my problems had to do with URSO..
Then I changed HEPs, I asked if I could stop taking it and he said sure then in six months let's see if how you feel and what the labs tell us. He went on to say there really was no way to prove URSO actually slows progression because everyone progresses at different rates. He said, that it might do that if started really early but for me I was diagnosed with cirrhosis.
Before diagnosis my labs were up and down. They were up when I was diagnosed and put on URSO; then they went down. Been off for two years now and labs are even better.
I have found other patients who did not do well on it either and stopped taking it. Through research, I have found many doctors who gree with my current HEP as well as other doctors who believe it is the best drug ever. I have seen patients state they have been on it 20 years and not progress and others on it at stage 1, took it and still progressed to transplant in 4 years.
So it's ll a matter of opinion. I do not regret going off it, I felt far worse on it. I rather have 10 years of feeling ok, then 20 bedridden.
The new drug will do nothing for me either as it lower ALP and mine is already in normal range. So I just take each day as it comes. Do the best I can, some days I can do more than others. I have a had rough 10 months but keep looking forward.
I recommend you talk it over frankly with your HEp and then decide what you want to do. Do the research so you have your own idea what is best for you and you have good questions for your HEP.
Thank you so much very helpful feeling lost mad sad angry! I am not taking it for a week or two then see how I feel I don't know how long it stays in your system so I have lots of reading and research to do, I am stage on liver biopsy never had itching or Alk Phos labs to b abnormal only AMA and liver enzymes and liver pain and bloating constipation I still have all of the same symptoms while on URSO but my liver enzymes are better but wow I feel sick everyday I hope you have a good day there prayers for you to feel good each day, it really is a day at a time with this disease right!
I would add that many tolerate URSO and others changed brands or waited a few months and the side effects diminished or stopped. For some it did nothing to change their labs and were taken off. That one I found odd because I've read it may falsely lower them, but honestly everyone is so different. My labs look really good yet I have cirrhosis. URSO also made me itch like crazy. My HEP said it should be reducing the itch. Once off it, the itch diminished greatly. It's all so crazy.
Sorry to hear that you are feeling unwell. I was diagnosed with pbc about a month ago and have started taking URSO. I have taken some time off work to try to get into a routine with taking them and to ensure I am eating healthy, as my appetite has been really affected by nausea which I think is a significant symptom for me. Like you I am very interested in other people's experiences of starting to take this medication. I think I was probably a bit unwell before I started the URSO, so it is difficult to now separate what could have been a symptom from a potential side effect. I am glad my GP has given me time off work as I have not been feeling too great at all. I have been experiencing abdominal pain and this week I have started with the symptoms of a sore throat, which sounds similar to your description of a swollen tight feeling in the neck and throat. My GP has advised me that this is possibly viral in nature and nothing to do with the URSO.
I have nausea today which just makes me feel like not eating, and I am feeling a bit down today as I am wondering whether I will get used to taking this medication.
Please let us know how you feel when you are off the URSO.
I've outlined my initial side-effects on starting urso on this posting but noticed you have mentioned that you were probably 'a bit unwell' pre-urso.
I started itching intensely early 2010 and a couple weeks later I took myself off to the doctor as I was starting to get agitated with it as it was actually 24hrs a day. I did have fatigue at the time but I never thought nothing of it due to long hours in a full-time job with very little time off in 7 months (I was stepped to full-time to cover for full-time manager in a small shop that is nationwide). I really thought in 2010 I was itching and feeling tired due to my life over the years - supporting myself as a widow (my late husband and I's children had grown up. I was left a young widow with 2 young children) then meeting up with a man who became my second husband and then going from part-time work to full-time. Never being sick I didn't think I'd be informed I had PBC (something I never heard of until mid-2010) and that I'd have to live my life out with it.
As daft as it sounds, I can encounter nausea at odd times but it isn't a regular occurrence for me. When it occurs I find it is best to eat something even if just a snack, it does actually help dispel the nauseous feeling.
Thanks for your post. I think today is just a down day for me, I guess I am feeling a little bit lost. Funnily enough I had a whole heap of investigations in 2012 when my I lost my appetite. The investigations at that time were inconclusive and losing my appetite was taken to be depression. I think now that I probably had the fatigue and general feeling of being unwell at that time and maybe it just was not discovered. I had been feeling relatively well since about 2013 and had noticed tiredness but associated this with being a mother and working full-time.
Last November was when they diagnosed an infected gall bladder which was removed in March this year. I guess I had thought that once that was removed my energy levels would come back. I went back to work to a very busy and chaotic environment and although on a phased return was quickly doing more than my actual hours. The Consultant who removed by gall-bladder raised concerns about my blood results in relation to my liver, and when I actually went to see the Gastro Consultant in July was when I was advised about the pbc. I must admit I had started to feel very low in energy particularly in the mornings, and had been struggling to concentrate, as well as feeling nausea and slightly dizzy. Sleep has been a problem for me since 2011 - as I often wake early and struggle to get back to sleep. I do not appear to have a problem falling asleep but staying is the problem for me.
I guess I have always considered myself to have sensitive skin - so am used to some kind of skin irritation, although I do not yet appear to have experienced the hideous itching that some people have described. Nausea is a problem and you are right although I don't feel like eating it is best to do so.
I am feeling a bit lost with not being in my usual work routine, and need to give some serious thought about how to continue with work. I have requested an OT assessment - as the way I feel at the minute I don't feel like I could balance the demands and stress of the job with looking after my health and well-being.
I will probably feel more positive tomorrow, just having a bad day. Thank you for sharing your experience of starting on the medication. I think it is probably too early yet to be able to say whether there is a benefit for me. I am back with the Consultant in October, so it makes sense to try to keep on with the URSO at least until then.
Hello Michiganpbc.
To me it doesn't sound like it could be the urso but as we all know on here I'm no doctor just someone with PBC who has been taking urso for 6 years come December.
I had initial side-effects on starting the urso. Not straightaway might I add but a few weeks later I noticed I had a bit of stomach bloating I didn't pre-urso and then I started experiencing heartburn plus constipation. i continued taking the urso due to the fact that 2 months after starting my bloods had started to come down. I'd say that after I'd been taking the urso 3 months side-effects did vanish except the constipation but I can deal with that by just stepping up with a bit more fibre than I used to have dietary.
After a change of manufacturer of the urso a few years ago (due to the original urso being withdrawn) I started with the heartburn with the new tablets. The branded ones I was given first of all (on a generic prescription - I am in the UK by the way) I had no problems, the second prescription were generics and I put it down to fillers in these that were causing the heartburn as when the prescription was put to one brand only (I take Destolit 150mgs) I had no problem at all.
Urso is apparently said to be 'well tolerated'.
You didn't state but I'd be interested to know if you had any changes in the bloods in the time you were taking the urso.
Currently there is no other alternative for PBC but there is a new drug that is being marketed in USA and in the process of now I believe and it is known as OCA, another form of bile acid. It is said to be used initially for patients who are not responding to urso so maybe this might be another alternative soon.
Thank you everyone for responding, I had the labs done yesterday all are normal now so the URSO is working which makes me want to try to stay on it, if you look up the side effects of URSO I have them most of them; heart burn terrible never felt this prior just once in a while and cold and flu like symptoms and liver pain worse bloating, I feel cold hot chills sweats, all started after starting URSO I have most of the new symptoms they list as side effects of URSO....
My internist gave me a good check up yesterday and he thinks it is possible to be having the side effects the only way to know is to stop taking it he said, but I need to talk to my liver dr. To do that he said today I am reading researching the drug , I may ask to try a lower dose or the other new drug now available.
I will let you all know what becomes of it all thank you for your support blessings to all.
Shame to come off urso as tests show it is working for your liver. My consultant said it is usually well tolerated so I would look for some other cause for your symptoms first. I have just been diagnosed with coeliac disease and I was incorrectly putting my symptoms down to pbc and/or urso for over 2 years !!
Also sometimes the stress of the pbc diagnosis upsets the body - I know it did for me.
Stick with it for a little while - it might settle, if not you`ll have to think again. Best wishes and let us know how you get on. Diane
Definitely see if a different brand causes fewer problems before discontinuing altogether; I'm surprised your doctor didn't suggest this. Many people here have reported issues with side effects that resolved after switching manufacturers. It's certainly worth a try, at least. You may want to do a new post about side effects and Urso manufacturers and see if others share their experiences with this. That's great that your labs have normalized - best of luck figuring things out.
Thanks everyone for your comments, I forgot to put here which URSO I am on here; maybe a common thread will happen if others post which one they have any side effects ....
I will also chime in to speak with your doctor/pharmacist about trying another manufacturer. I was doing well on my original prescription but once it was filled by another manufacturer I experienced nausea, bloating and generally just not feeling well. I was fine once they switched me back. The fillers they use can be different. On a good note, after 2+ years on Urso I seem to tolerate either brand now as there have been times when the manufacturer I prefer isn't available. Maybe it does take some time for your body to adjust. Best of luck to you and I hope you get some relief soon!
Thanks so much, I cut my dose by one pill I now am taking 2 and actually don't feel as bad as the past few days I may just need a lower dose if it doesn't work I will ask to change brands I am on the generic, I am a very small person and I seem to react to anything I take so I am probably sensitive to it but not giving it all up yet thanks for your reply it really helps me to think more positive.
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as it lower ALP and mine is already in normal range. So I just take each day as it comes. Do the best I can, some days I can do more than others. I have a had rough 10 months but keep looking forward. 
Symptoms of non responder to urso
Stopping Urso on trial
Unable to take Urso for PBC
