Itching and Ursodiol

[general1]

Hi! I'm new to this group & was dx'd with PBC in April 12. I have been dealing with joint pain...fingers, knees etc. I don't have RA my Dr thinks its just the PBC. I have been taking 2 Ursodiol pills daily but my dr has bumped ne up to 3 500 mg pills a day. Dr thinks cause my alka phos is still in the 200s taking more urso will help. My hands & wrists are breaking out with little blisters and they itch like crazy. Has anyone had this happen...is it a reaction to more urso? I had no itching prior to taking this 3rd pill.

[kosy2]

First I want to say Welcome to the group. As far as your question, as I do not take any medication for PBC I can't speak to URSO on a personal level, however from research I have done I believe the amout of URSO is based on weight not LFT results.

I was dx Jan. 2011, and find that I know more than most of my doctors when it comes to PBC. If you have not already done so take the time to read All the past post here. There is a massave amount of great information about PBC and living with PBC first hand.

All the very best to you.

[catherine69]

Hi there

yes urso is calculated by weight, I would get back to the doctors on monday and get this sorted, if hes not sure he can phone your liver doctor, when my itch got bad (a few year back) the doctor I seen that day did not know much about pbc, she asked me if I would mind that she contacted the liver doctor for advice before giving me a prescriptions, I was fine with this and the next day I got a prescription to help with itch.

The first doctor I seen (GP) regard PBC told me to go home and forget all about pbc as it would not effect me until 15-20 years, I changed doctors and the new doctor admitted she know very little about pbc but was willing to seek information from others in order to help me, she also appreciates information that I gave her (stuff from pbc foundation), I remember I went to the first doctor about a year ago, only took the appointment as I could not get my regular doctor and he dismissed all my symptoms stating pbc does not have any symptoms, but then again I was also told that by one of the liver doctor I seen......I'm sorry but I'm starting to babble here and have actually forgotten what I was trying to say to you lol but yes I would defo go back to your doctor

[Hidden]

My GP told me more or less the same to put PBC at the back of my mind and forget about it, Then I was given urso and along with it came, more pain, the itching and not wanting to eat so I couldn't put it at the back of my mind then, I can't even take a paracetamol these days without having a bad reaction to it, I think I am having a bad reaction to the urso and am going to ask if I can come off it for a bit next time I see the gastro to see how I go. I didn't think urso had side effects until i delved more into it on the net but don't know if I should believe all I read on the net.

[Hidden]

Hello general.

I don't know your locality but could the itchy like 'lumps' on your hands and wrists be due to sun?

Since I reached adulthood in summer months when out and about just walking in the sun I have always tended to get tiny red lumps on backs of my hands and the top of my feet that has been sun exposed. I know they used to itch later in the day and then I discovered that other people experienced the same during the sunny months. I think it is sun as I recently had been out in the sun and we haven't had that much of it in England of late and I again got the tiny itchy lumps. Since not seeing the sun in well over a wk here now, they have vanished BUT I still get the dreaded itch due to PBC in the evenings. I go thru periods where I don't have any for days on end and then bingo, back it comes again, always later at night and during part of the night.

Urso as I understood is taken with regards to weight as it's not known exactly what is a 'correct' dose tho' awhile ago I read some earlier research on urso and PBC and it was found it apparently made little or no difference with patients taking higher doses as to one done by a weight.

I think maybe if you looked at your blood results print-out as I do they should give you a calculation sort of gauge of what is considered between normal levels and you can see exactly as I was surprised to find out that mine don't look overly-bad, never really have been so alarming. I also think it depends where you live and what country and opinions do differ between doctors with regards to PBC. My GPs don't apparently have anyone else they see with PBC as I did ask and whereas one GP I saw in practice last yr as a new patient seemed willing to go thru all the 'dud' blood results for liver function, another one I saw at med review earlier this yr wasn't and he couldn't even see why I wanted a print out of the blood results!!!

As for having PBC and then sort of being told to just get on with life as lindaclark mentions, better said than done. I have been diagnosed 18mths now and some days it is nice not to think about it but if an evening where the itch surfaces, no sooner do I feel that type of itch it all comes back again. I know if only we could just give the itch to the medical profession out there for a day and see what they think........now that would be interesting.....!

[general1]

Thanks for all the replies! Peridot you could be right about the sun and the bumps I was getting. I live in Florida. It just seems strange that as soon as I started taking 3 Urso pills the bumps appeared. I decided to try taking 2 1/2 to see if that helps. I think that Maybe my GP was correct thou as my joints aren't hurting as bad. My ALT & AST are now back into normal range but my alka phos is not. I just know that when you feel like your 90 and I'm only 42 it sucks! I'm on celebrex for arthritis pain in my neck but it does't help the other pain. My GP seems to know more than my GI Dr. She has others patients with this disease. I still want to visit with a Dr in Miami University as it is one of the best transplant centers here in US. It's hard to forget that you have PBC. If I stay busy I'm fine but as soon as I relax it seems it's right there on my mind. This has all come on so fast that I feel like I've lost my life. About 7-8 months ago I was riding my horses and felt great. How can this disease take your life & turn it upside down so fast? I know my life isn't over but I still get so down and out... :0( Thanks for listening to me everyone...this site and the PBCers Org has helped me so much.

[Jtxx in reply to general1]

I know it is hard at times, and we all go through days when we are just fed up of the whole situation we find ourselves in, but as we cannot change our diagnosis we have to remain positive as positive thinking goes a long way. If you just want to rant and moan we are all here for you. Btw my friend gets those red blustery spots in the sun on her arms and hands. Steroids help her (think she can only get the ones that help her in Spain). Keep as well as you can. X

[Oidra]

Hi General,

Being told you have PBC is shattering and the way you are told can do such a lot of damage. I was told I had a terminal illness when I was as fit as a fiddle cutting down 20 foot laurel trees in the garden. Eventually I was able to look at it from another angle.

A lot of people are walking around with probably devastating health problems they know nothing about. We know what we have and are monitored by specialists who can help us live life as well as we can.

Oidra

[general1]

Oidra...you are so right. My GP said to me "there are so many worse things than PBC you could have been diagnosed with".