Alternative

[Urso462]

Has anyone else not been able to take urso?

[emerich]

Hi urso462

I was put on urso and was fine for the first 7 days,then I woke up to blotchy blisters all over,having been itchy all night,followed by swollen lips and eyes, and my blood pressure dropped to 64/36. Back to normal 3 days after stopping the urso,but now have no treatment for slowing the pbc. At present I have no serious symptoms of pbc,but not sure what will happen if it progresses. Did you have a bad reaction to it?

[Hidden in reply to emerich]

Hello emerich.

Reading your posting, think I am right in stating you only took the urso for 7 days?

I had initial side-effects when I first took urso back in early December 2010. I continued taking the urso and after a few months they vanished. (All except one, started to become constipated after starting urso but have managed to adjust dietarywise.)

Did you seek medical attention and chat about the urso at the time?

From what I can understand urso is said to be 'well tolerated'. It could have been the filling agents and not the ursodeoxycholic acid that caused these side-effects. I have experienced some side-effects myself after a change of pharma for the urso a few years ago (my original ones were withdrawn) but I noticed the fillers varied.

I thought the itching was worse on starting urso. This is how I was diagnosed, started to itch 24/7 with much intensity early 2010.

[emerich in reply to Hidden]

Hi Peridot, you're right ,I took it for 7 days with no trouble at all. Saw a doctor on the day of the reaction and she told me to stop taking it until I could see my regular gp because she didn't know much about pbc. When I saw my gp he said not to take it again and classed me as allergic on my notes, as did the gastroenterologist when I saw him. My BP dropped to 64/36 and had swollen lips and eyes, apart from all over itch and rash. To be honest I would be scared to take it again, even as a different brand. It was destolit that I had.

[Hidden in reply to emerich]

Hello again emerich.

By coincidence I've been taking Destolit now for about 3yrs. I started off on Urdox but it was withdrawn a few years later. I've always had the prescription written generically but the 300mg tablets seemed to be Urdox. When these were withdrawn I was given Destolit by one pharmacy and was OK but then next time they supplied generics that I started having heartburn with daily. After the tablets were finished 90 days later I asked the GP to write my prescription for Destolit as I'd no problems with those. Benn on these since and can't say I've had a problem. I did prefer taking the Urdox though as they were film-coated and easier to swallow than the dry Destolit ones that you sometimes get a sour taste from.

[emerich in reply to Hidden]

Yes I remember you mentioning that you were on destolit.My chemist had to order it in for me so guessing there's not much cause for it around here.

[Hidden in reply to emerich]

Hello once more emerich.

When I collected my last prescription for Destolit in mid-December I had to wait for 4 days as the pharmacy said they were encountering problems getting it! Normally they have to order it in anyway, never happened when I used to have the Urdox.

[emerich]

Just realised I've repeated most of my earlier post,sorry.

[DianaRo]

I too couldn't tolerate urso. I was in excruciating stomach pain for three weeks. Both gastro and hepatologist agreed I couldn't tolerate it. Can't afford Ocaliva at $70,000 per year out of pocket. Medicare won't cover it. I've gotten great help with digestion problems by taking 1,000 mg a day of pure milk thistle capsules, but my last ALP results were 715 and bilirubin is also way up. I'm Stage 2-3 PBC. Just thankful to have some relief with digestion problems.

[Urso462 in reply to DianaRo]

Hi DianaRo, glad you got some relief. Was that relief from milk thistle

[DianaRo]

It's positively from the milk thistle. I haven't made any other changes to diet or meds and have been in terrible digestive pain for nearly a year now. My son is a health supplement manufacturer and he had the capsules made for me -- pure ground milk thistle with no fillers and in capsules that don't dissolve until they reach the intestines.

[Urso462]

Glad to hear. My tongue is not swollen anymore but is so sore. The feeling is like when you burn it with hot food all over. Be glad when this goes away. I got some milk thistle today but won't start till tongue settles down.

[Chrisprio]

Hi,

I was wondering how you were taking the Urso, all at once or spread throughout the day. I had quite a reaction at first but this was with severe itching or prickling under my skin. I was taking the Urso 3 times per day and eventually, after weeks, my body must have got used to it and the itching eased. Six months or so after this my consultant got me to take the Urso all at once at night. I know this is different to you but it makes me wonder if (for some of us) our bodies may be able to build up a tolerance of Urso after a while. Had I not known that itching was a possible temporary side effect I think I would have wanted to stop taking it but I'm so glad I was able to persist and for things to settle down. I'm not saying this is how things might be for you but I thought you might be interested to know.

Have you thought about contacting the PBC Foundation to talk through what they think your options might? I can't praise them highly enough.

Best wishes, Cx

[Urso462 in reply to Chrisprio]

I will contact the PBC foundation. Thanks for reply