Everything itches - my back especially and my arms legs and face - it's ridiculous. I went for a few days without reactine to see how I would be and tonight I can't atop scratching ... I've got red marks all over from scratching ... Guess is back to the reactine.
I also started taking calcium and vit D today 
I call mine the creeping itch as that what it does. I was only diagnosed in March but I've itched for years so probably had PBC for a long time. I really try not to scratch, but when you sit there twitching people look at you like, what's wrong with her? Haha. Were you given the calcium and vitamins by a doctor? When I asked my go about possible deficiency he just gave me a lecture on eating the right foods.
That's is what it feels like ! No she just gave the the rush and that was it . Is there something else I,m supposed to be taking ? I was taking reactine but if something is better that I'm supposed to be taking I'd rather do that
I don't know to be honest. I've never had anything for my itching and haven't been told what I can or cannot take for it. Nor have I been told anything about calcium or vitamin deficiciancy it's only what I have read on here from other people. I feel like I have more or less been left to get on with it. My consultant (who I've seen once to confirm my PBC diagnosis after a biopsy) doesn't want to see me for a year and I have no idea if I should have regular blood tests. It appears that some of us are a lot better informed than others. Do you think that depends which country you are in?
can you call to get in to see her again? it's after it all sinks in that you have questions. that's odd she doesn't want to see you for a year? My dr. booked me in for 8 weeks and I have to have more blood work done a week before so she can monitor how I'm reacting to URSO. Also in the 8 weeks I will have come up with questions to ask her. (I was diagnosed Apr 20th). It might depend on the county. Not sure (I'm in Canada)
I'm from the UK. I've been prescribed Urso but haven't started it yet. I'm going on holiday and been told I can hold off taking it until I come back in case of side effects. That's what concerns me, how are they supposed to know if the Urso is working if they don't see you regular? I suppose it means another trip to my GP for a chat though it often feels one sided. I think I have just got to the angry stage where I feel like none of the professionals are listening. Thats why I am so glad I found this forum. There are people who understand how we feel and it helps such a lot.
this forum is the best place for you to be. But if you have to fight to be heard - than fight - you're fighting for you. They won't know if you're responding to the URSO unless they monitor you through bloodwork. Right now there is not another med on the market so may that's why they didn't need to see you right away - cuz there's nothing else to give right now. But if you're not responding I believe there's a clinical trial - but I don't know much about it (for a new med).
In terms of the side effects from the meds - I guess you'll have to see your family doctor if you notice any or they become bad enough that they affect you. Mine haven't been. The first day or so I could tell my body was adjusting to the meds, but things have seemed to balance out. I don't have any side effects from the medication (no more stomach pains or diariahhia)
Most importantly if you feel not listened to - you make sure they listen!
Thank you for this chat, Becca. It is very reassuring to talk to others. I will go to see my GP try to get some answers.
Hi, I would urge you to go to your GP and demand you have regular blood tests...and if your GP refuses, then ask to see another.
I agree with the others here...you need to be monitored to see if the Urso is working. I'm in Wales and I was put on Urso as soon as my GP suspected PBC due to my positive AMA results and raised GGT levels and generally raised LFTs. That was in December 2015. I had monthly bloods taken, which showed a good response to Urso. I had an initial ultrasound scan from the hospital in January, which informed the consultant who put me as 'routine' as there was no visible damage. I had another ultrasound about 6 weeks later just to check on a collection of cells in the liver, but these haven't grown at all so they're not worried about them. I finally saw my consultant 2 weeks ago, and he's happy with my response to Urso and doesn't expect the PBC to progress quickly, but I'll have 6 monthly then annual bloods. I've got a fibroscan appointment in a few weeks time...this will measure the elasticity of the liver to see how healthy it is. I guess if it's healthy then I'll just have annual check ups. I think you should see your GP and tell them about this forum and the PBC foundation...maybe the GP needs to do some research!! I feel very lucky to be getting the service I'm getting...you should demand the same!
Let us know how you get on.
Good luck and stay well, and enjoy your holiday. As for side effects of Urso, they're not very bad, maybe a little bit of nausea, sometimes a bit of itching, but it calms down after a couple of months.
Best wishes
Hilary
The Itch
Itching (I know it is redundant)
Itching hives on neck & eyes
Food and itch
Itch
