I am newly diagnosed with PBC. Realize from reading here that I should ask my doctor what stage I am. I started taking a large dose of generic ursodiol about 9 days ago. I've read that most people do not have reactions to the urso but I think I am having them because that's the only thing that has changed for me. I have had raging headaches that do go away with Tylenol, although I take that very sparingly. I also am having a period of intense itching at some point each day. I've read that the itching is a sign of liver issues but I never had it until now that I'm taking an medicine I thought would help, not create the itch. I've read about the drug on line and one article suggested that maybe the negative reactions would gradually disappear as my body got used to it. Has anyone had that experience? I see a lot of postings that mention itching.
Another question - how long do you take the urso? For the rest of your life? Do you take it at the same dosage or lower as your numbers improve? I'm asking you on line because you all have a wealth of knowledge based on your own experiences. I'm not sure how many PBC patients my gastro doctor has. I believe he's taking instructions from the liver specialist that he referred me to. That doctor is impossible to reach. My gastro is easy to contact but I'm not sure of the extent of his experience .
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littysgirl
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Hi honey. I have had no side effects. The itching is part of PBC, mine comes - goes. You say large dose. Your dose is worked out normally by your weight. I'm on 900mg a day. Yes we're on it for ever. I do not know what stage I am. They can OK only do that by biopsy. & I won't have one just for staging as it can be different depending on which part of the liver they choose. If you haven't already join the PBC foundation. The wealth of knowledge is outstanding, they've been my rock. Xx
Welome to the site and hope we can help. It is a great place to talk with other PBC sufferers.
I also had itching more when I started Urso...still have it on my arms but I was given some good cream by the GP. Luckily no headaches but my stomach gets upset. I know in my case I am on them for life. My dose has stayed at 750 mg a day so far.
If you need to see another gastro then you could ask your Gp to refer you elsewhere. I see a gastro at the hospital who is not specifically a liver man......but he is well up on liver diseases. Are you in the U K.? If so you are entitled to a second opinion.
I am in the U. S. I was going to one gastro,liked him personally but his support staff was terrible so I tried a different gastro who I like and his staff is friendly and very helpful. He sent me to a liver specialist and now is consulting with that Doctor as to how my treatment should go. I think I have a good team but it's early so I'm still asking questions.
Sorry teddybear 7 ...I must have pushed the green tab by mistake. Wanted to say that the fibroscan is used now too to determine what stage you are on, my consultant doesn't do biopsies now.
Funny that, I asked my gastro about a fibroscan, as there's one in Bradford which isn't too far. & he said that they would get no information off fibro scan. Worthless exercise regarding PBC. Maybe we should have another discussion. Thank you. Cause they're still harping on about this biopsy.
There seems to be such conflicting info...some say biopsies dont always get the worse part of the liver, others say they are the best. I was just happy to have the fibroscan which was done at Nottingham Hospital. Good luck
I too had intense itching, like needles under my skin, when I first took Urso. The patient information leaflet said that this could be a temporary side effect so I didn't go back to see my GP. It took a couple of months to clear as my body got used to the Urso.
I now have milder, intermittent periods of itching, usually at night or if I get too hot.
I'd really suggest that you contact the PBC foundation. They are so knowledgeable and supportive.
I have been on Ursofalk for over 10 years so I do not remember any adverse reaction from the beginning. Once diagnosed with PBC you will almost certainly be on Ursodeoxycholic acid for life. If you read the leaflet the dosage given is worked out by the amount you weigh. The leaflet and doctors recommend that you start the dosage spread out throughout the day and then after 3 months (I think) change to taking it all at night. It is only recently that I started taking it all at night having read an article in the PBC Foundation Bear Facts magazine. I think if I remember correctly it was written by Professor Neuburger. The PBC itch does not seem to be an indicator of stage or progression of the disease. Some others on here take their tablets throughout the day, as with much of PBC it seems that we have to rely on ourselves to get this balance right.
There is an alternative if you do not settle down with Urso but at the moment I cannot recall the name of the drug.
Apparently some people have an adverse reaction to the fillers in a particular Urso product and changing to a different brand may help with your reactions. However with most drugs adverse reactions settle down after a couple of months.
Perhaps you could email the PBC Foundation and ask them or have a look on line for adverse drug reactions in your particular prescription.
Following another article in The Bear Facts magazine it would appear that if you do not have many issues with PBC (this is for the UK) you will be cared for by your surgery. You will also see on here that many PBC sufferers, me included, are discontent with the medical profession and their handling of our condition. Some of it seems to be a genuine lack of understanding of the condition and the patient.
If you have not already joined the PBC Foundation, it is free, then it really is worth it, there are some videos which are helpful and the Bear Facts magazine is a useful resource. Once joined you can access their members section.
Liver North which is a charity based in the north east of England livernorth.org.uk/ is another valuable resource. They have a DVD which is useful - they send this out for free but welcome a donation to cover their costs.
I do hope this has helped, it does seem a bit long!
Do you know if PBC Foundation offers the Bear Facts on line to US? Seems the UK has the most recent information. Perhaps a copy could be sent by donation thru the postal service. This site is such a blessing with real people telling their own experiences...I Thank You! Delisle/US/Michigan
Yes I believe you can access the PBC Foundation once you are a member. Free to join follow link above or pbcfoundation.org.uk/
Once a member you can access all parts of their new web site. I have not had a good look at it myself yet but it is on my to do list!
Do you know above PBCers Org to be found in Texas? They have a page on face book and can be accessed also through Yahoo groups. I have linked to another site on face book called Living with Liver disease. This page offers a wealth of knowledge about liver issues some of it can be relevant to PBC sufferers.
Liver North have a DVD which is helpful you could always contact them to see if they can send this to America or if there is a way to access the information on line
Urso in my opinion creates the itch. I lowered my dose myself and mostly my itching stopped but I have to check that it was ok to lower it. I have no idea what stage I'm at either. That seems an American thing. Best of luck with it all.
Hello littygirl.
I have never asked at what 'stage' I am with PBC. The consultant just said I had probably started with PBC 'a few years prior' (to 2010 when I started itching) and that was that. I've no desire to find out as quite frankly I am not interested. I just go with how I feel and have bloods done at intervals. Diagnosed Dec 2010 I just continue to itch but after taking the urso for some time the itch started to alter whereas now I itch later at night (causes broken sleep during the night frequently) but I do not itch 24hrs a day like I did during 2010.
Urso for me in the early months I took did cause me a few initial side-effects. These vanished though. I did think the itch felt worse for awhile after starting the tablets but I continued as I think you need to have a repeat blood after starting to see for yourself how you are doing with the urso. I got pretty good blood results 8 weeks after starting urso so I continued to take it.
Unfortunately the common symptons of PBC are itching (pruritis) and fatigue. I did have fatigue in 2010 but at some point it vanished during 2011. I get tired later day due to broken sleep at night.
Urso is deemed for remainder of life once diagnosed with PBC and taking it. Unless of course something else comes along that is considered better than urso.
I chose to ask the consultant later 2011 if he would discharge me as at the time I didn't have any further symptons of PBC and was doing quite well. He agreed on condition in event needs arise I would return to out-patients to see him. This was 5 years ago later this year and I am still doing OK. The consultant I saw said he gave talks on PBC to GPs to make them aware of it.
I did ask at my GP surgery last time and the one I am now registered with (I am in the UK) if they had anyhone on their register with PBC but all I got was it is Data Protection. Isaid I wasn't asking who these patients were if any, I was asking if they had anyone registered there so I could see the same GP and we perhaps all could learn something but of course that didn't go down well and I've never found out.
There is Liver North in the UK who can supply you free of charge with a dvd all about PBC. I got one several years ago now. (I didn't watch it all, my husband did though.) There is also a leaflet on PBC you can download to see online from Birtish LIver Trust and of course PBC Foundation.
I just choose to live life and get on. I don't intend to worry about what PBC might one day become as to me that would be needless worrying now for something taht might never be. Easier to deal with things as and when as to think about them now.
I know you feel this as I did but when you are at stage 4 it becomes very important ..living life of course you are right but thought at my stage is also necessary as symptoms increase
I actually get migraines, and have since I was about 8. I have noticed that about an hour after I take my ursine I get a headache. Not a huge one, but I do have to take something for it. Talk to your doctor about taking Tylenol though because it affects the liver, and filters through it. So you may have to take something else
Loraray, does your doctor know you stopped the Urso? If you definitely have PBC, it could be very important to keep taking it. Many people report that the Urso-related itching is temporary as your body adjusts to the medication. One theory is that the initial itching is due to the Urso working to improve the function of the bile ducts. How long did you take it before giving up?
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Urso side effects.
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