Hi! I dont have pbc but i am taking Ursofalk 3 capsules a day beacuse my liver problem and i hope you can help me. I have asimptomatic liver disease (criptogenic), my AST,ALT was 4, 5 times upper level, my GGT is never below 200 and ALP is also above 200. I have liver tests like this for 3 and a half years. I have negative tests results for all hapatits viruses, for all autoumune diseases and all other liver diseases. I ve done liver biopsy twice, first time results said i have liver cirrhosis, but the 2nd that ive done 3 months ago said that fibrosis of the liver is 2-3/6. I also have medullary sponge kindeys. So, my gastroenterologist decided to do something about my liver, try to make it better. First we tried with Ursofalk, and im taking it 2 weeks now and since i have some problems. I have itching problem but there is no rash, and i think i will go crazy. Itching is the worst 2 hours after taking Ursofalk and wake me up every night few times. Do you have some advice what to do or how i can ease the itching? Im studing and now is the worst time for me to have itching and not sleeping. Also, has anyone of you had bruises as side effect for taking Ursofalk? Last week i just woke up with 40 and more bruises all over my legs but now they are fading and there are no much more new ones. But this itching, i cant stand it!
Ursofalk and itching: Hi! I dont have pbc but... - PBC Foundation
Ursofalk and itching
Ana1806 My deepest sympathy. I am struggling with itching for years. Sometimes it gets so bad, but now a days I must say it is more tolerable. I watch very careful what I eat. No fatty foods, no gluten. No perfumed soaps. No alcohol. Hope you can get some relief.
Cholestyramine stops the itching which they believe may be caused by the cholesterol floating around in our blood system so this works by binding to the cholesterol so you urinate out excess cholesterol which stops the itch. I have it and I only had to use it twice and the itching sibsided quickly maybe within an hour.
Hi Ana1806
I have been an itcher since 2014 but have been on URSO since 2006. Hopefully once your body adjusts to the medication the itching will settle down. In the meantime here are some of the things I have tried - ice directly on to the irritated area (not so easy if it is your back), a 2% menthol cream which is another temporary solution here is a link to one product
amazon.co.uk/Arjun-Menthol-...
If your specialist will allow you to try antihistamines I used Cetirizine two tablets twice a day, this worked for a while but not completely. I am now prescribed Rifampicin with Colestyramine. Colestyramine on its own works for some but it is awful to take.
Rockie advice on watching what you eat is a good idea as is keeping well hydrated and keep your skin supple with a bland cream such as aqueous cream or E45 cream.
Some on here have suggested cool baths some using epsom salts.
Perhaps a quick telephone call to your specialists secretary would be a quick way to get advice from the specialist.
Hope this is of some help to you.
best wishes
Hi Ana 1806, on first taking Urso I had a really bad side effect of itching. It lasted for quite a number of weeks but it did ease and now I don't have itching at all. Even though i haven't seen anybody posting on here having increased itching on taking Urso it is noted as a possible side effect on the medication information leaflet. That really helped me cope with it and I hope the temporary nature is the same for you. Best wishes, Cx
Chrisprio. I was on Ursotan for 8 years but switched to Ursofalk and felt terrible and itched like crazy. I then started using low doses for few days and will gradually increase the dose to the prescribed 750mg per day. Just wondering if it is common to have such a bad reaction. Now I am hoping that when I am on full dose, my body will react better.
Have you actually seen a liver specialist, especially someone who is an expert in PBC? I would recommend that. Some 5% of PBC people can have PBC without having AMAs (the autoimmune agent) present. What detail did they give about the cirrhosis shown on the 1st biopsy? Was it typical of PBC or not? It might be worth asking to see a PBC specialist.
However, if you are taking Urso, that is good. A lot of people on here have said that the itching with Urso is bad at first, but can then ease off, so try to keep on taking it. Meanwhile, try the great advice given here by butterfly and Rockie, and hopefully yours will ease, too. Urso is the main help for PBC, although other treatments are becoming available.
Talk to your liver specialist about your itching and see what they suggest. Don't understand why you would be on Urso if you do not have PBC
Thank you all so much for your replys and help!
Rockie, I will try to be more careful what i eat, im really skinny and i really eat a lot of pasta :)) I dont drink alcohol at all for 3,5 years, since i have this liver problems. I will try using another soaps cause i noticed that the itching is worse after showering. Im a girl in mid 20s and of course i ve been using perfumed soaps 
Buterfly, I have tried with ice, but i noticed that after i stop cooling the irritatetd area itching becomes even worse so i stopped with that. I did not try with menthol cream, do you know maybe if i can buy it in farmacy? I have apt next week so i will ask my specialist about antihistamines.
Chrisprio, Before using Urso i didnt have itching at all. Yes, i know that its on medication info but since i dont have pbc i didnt expect to have it and my specialist didnt even mention it, she said that is possible that i have diarrhea so i was prepared for that but luckily i dont have any signs of that.
It really comforts me when you say that itching will stop.
GrittyReads,Yes, my gastroenterologist is also liver specialist. I ve been in the best transplant center in my country, and my specialist is one of the best for liver in my country. No, the two biopsys didnt show any signs of pbc or any other liver disease, they said it can maybe be congental. Only second biopsy showed that i have a slight colangiolar proliferation. But the diagnose section was blank.
So my specialist was thinking to put me on corticosteroids, but since it has much worse side effects, she put me first on Urso to see if it can make my liver better. So i really hope Urso will help cause i really dont want to use corticosteroids, but if it will make me better im gonna take it.
Ohio, my liver enzimes are really high all the time, and my specialist decided to do something about it to take them down somehow and help me since i have negative test for all liver diseases. She has been thinking about it a lot, she talk to other specialists and tried everything, i litteraly had all possible liver test there is. And they are all negative. She really didnt know what to do, i am 26 years old and we want to try everything to make my liver better so i dont end up with liver transplant. If Urso doesnt help, i will try with corticosteroids.
Ana1806. My heart bleeds for you. You are still so young. I am 76, but it seems as if you really have good Specialists looking after you and I am sure they will find the right solution.
Thank you Rockie. When i read what you all here have been through, feeling pain and sick every day, i feel really stupid for even talking about itching.
Yes, i ve been to a lot of specialists till i found current one. Not only she is a good specialist, she is a good person, and i feel safe, and that, i think, is really important.
I think you should call your doctor's immediately..
Sounds like you're alergic too it having serious side effects. Let him decide if and what to do. We mean well but we're not doctor's here.
True. My itching turned to wheps. Came off Urso unfortunately
my itching as I understand is related to the bilirubin and having skin exposed for a short time to sunlight helps ( like they put some babies under UV light cos of bilirubin levels - Urso falk which I started taking a year ago hasn't made a difference either way. Bruising is often a sign of poor liver function so it might be an idea to tell your Doctor about the bruising and itching you are experiencing. The leaflet that comes with Ursofalk will list the reactions that may be cause - have you looked at that leaflet? Take care and hope you find solutions that work for you soon.
Get sunlight when you can to break down the bilirubin
which causes itching and stay away from processed foods which contain preservatives and other chemicals which your liver isn't able to process and the toxins back up into your bloodstream and causes itching.
Ana. You have my sympathy with the itching. Mine is worse than ever since I changed from Ursotan to Ursofalk. Drives one crazy. I am now trying to take lower doses per day
Ana. I only changed the medication as the Medical Aid in South Africa would not pay for Ursotan (that has cost me a fortune every month) and after the Specialist tried once more, they again rejected Ursotan but agreed to Ursofalk. Well I must just give it a good try. My last blood result on Ursotan, was the best ever in 8 years. So I will have it tested after being on Ursofalk for 6 weeks and see if it still is as good as the last test. I am total alcohol, gluten and fat free. Try so hard to do everything right for the liver, but it has its own mind.
I wish you all the best! Did you try with antihistamines?
Sometimes we can do everything right but liver go crazy, my liver function test are always high, four to five times upper level, it doesn't matter what I eat or drink.
I 'm going to see my specialist next week, I think she will put me on Prednisolone.
Ana1806 I try and avoid antihistamines. It only helps sometimes and it puts further pressure on liver. Thanks anyway. Hope your specialist can come up with something for you.
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