My itch was unbearable - I have now been under the RPA transplant ward for 10 months. I went through all the workups for placement on the list, but couldn't take the itching anymore. then was prescribed a drug called Rifadin or Rymicin or also known as Rifampicin. 300mg a day . it took about 7-10 days to completely kick in But OMG I've cut back from 100% scratching to 5%.it works!!! ask your specialists. I'm in Australia, maybe different name o/s.
but I've tried everything and anything hoping to stop the itch. Nothing ever worked. even had a long course of treatments known as Plasma Apheresis..nothing ever worked. Am feeling so much better. I sleep all night WOW!!!
My scabs have healed(scars remain) but I feel like I have a new lease on life. Plus I have moved off the active transplant list to the in-active list!!Amazing!! I still take my 6 ursos a day, and prednisone, and vit D but what a change it has made to my overall sense of well being. earlier this year I was sorting out my loose ends in case I don't make it through the transplant. And now Im relaxed, happy and sleeping ...YES SLEEPING. hope this continues to work, but for now im enjoying life!
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SNOOZY
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Hi Snoozy thats fantastic I am so happy for you it is such a relief to have much less itch. I did try the Rifampicin but am now thinking maybe I didnt take it for long enough. What dose are you on and how soon from starting to take it did you notice the difference with the itch?
Apologies Snoozy you have answered that question in your post. Bad retention of info on my part. I will ask my consultant about it again when I next see him in Jan. I know I did try it but maybe wasn't on right dose cant remember what dose was prescribed. Do you take anything else for the itch? I take questran light 3-4 sachets a day but have found recently having a lot of constipation and would like to go off it but daren't as I know even if I miss one dose in the am the itch starts.
A big thank you for that info I am going out of my mind with the Itch have been a wake all night in tears not knowing what to do next my skin is so sore and the prickly feeling is torture.I do remember asking my Consultant a bout this medication and he said it can affect the Liver so was a bit put of taking it but I think I will have to mention it to him again at my next app i am so desperate.Take Care
I am so glad that rifampicin seems to be working for you with regards to this awful itch (yes I suffer from it at night, that is almost every night).
I get pretty sceptical about certain things myself and I was and still am a bit about urso. I've never been someone who could take a tablet as I've always been a person who will avoid. With urso I hate taking it and with the notion of its for the rest of my life, it sort of makes me feel so out of control with myself. I know if I had been informed I had PBC quite out of the blue and had just the fatigue at the 'start' (early 2010, diagnose Dec 2010) then I wouldn't have taken urso. It was only due to the itch I thought it might make a difference. It has made some difference as in fatigue long since gone but itch still remains but is a bit less prevalent these days (for how long no-one can tell).
I did read about rifampicin quite some time ago but being quizzical and also reading about possible side-effects, I started wondering. A lot of things are a gamble and as far as I can find out, if you 'grumble' about itching to a doctor and you have known PBC then the first line of meds is normally the Questran to try. There are a few others, naltroxene is also one of them (that I believe is currently on trial alongside urso for PBC, to do with fatigue it appears).
I'm not sure but any others on here might fill me in, think via the NHS you have to follow a certain pathway with regards to the itching. I think this could be due to the fact that certain other drugs could alter the LFTs. I expect y our LFTs have been monitored slightly more frequently since starting rifampicin to see if they are still on the decline?
I'd like to hear over a period of time how you are doing using this drug alongside urso as you never know, it might be a possiblility for more of us.
Thank you for sharing this. I found through searching the threads. I definitely hope that everything is still working for you hun. Is it still working? I did find a new drug in clinical trials (phase 2) that might help the itching called LUM001 I believe.
I had a shower yesterday and used some well known shower gel ( not cheap stuff or soap )
Last night i could have done with a sheet of sandpaper in bed with me, still a itchy this morning may just have a cool water only shower later, i feel more like having a bath with a loofa to take my skin off at the moment, I also have a very dry mouth ( very thick saliva ) and sweating like a tap overnight from my head.
I am getting totally sick of this stupid illness that neither my GP's or consultants seem to want to know anything about.................. sorry just having a sound off
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TERRIBLE ITCHING ALL OVER ALL DAY EVERYDAY!
Itching
Anyone else have their PBC itch stop? 
Itching! 
