More questions than answers

Well today I went to see my liver specialist. She doesn't understand why my itching is so bad and why did it start over a year after diagnosis. She did double my colestyramine and is wondering if the Ursodial is even working? She did mention that my last liver tests were off the charts but yet the ANA was negative. Which might indicate AIH. I did more testing today and go back in a month. If the itching isn't any better I'll be put on steroids.I now have many questions and feel like I didn't get any answers today! Can anyone tell me what juice they use to disguise the colestyramine powder? I now have to disguise 2 scoops at a time.

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  • Hi Krazy-girl, seems I have PBC/AIH... for this reason my liver specialist gave me AZATHIOPRINE (Imuran)...for colestyramine powder I use normally, orange oe apple juice. take care of you :)

  • Hello krazy-girl.

    As I understand it itching is of no correlation to how we are with the PBC. Back in 2010 I started itching intensely and 9 months on I was informed I had PBC. Even though my LFTs (liver function test) and GGT have come down considerably since starting the urso December 2010 I still have the itch even though over time it altered in intensity and tends to be confined to late at night (11p.m) until around 6a.m (causing broken sleep).

    In the early days I thought the urso was causing me to itch more but as time passed the itch altered.

    Steroids are for inflammation so I can't see what they'd do for the itch in PBC. Unless the idea is that if inflammation is greatly reduced maybe better liver function can reduce the intensity of the itch that seems to make sense in thinking. I believe that steroids are used in AIH but I don't know much about that. British Liver Trust have a leaflet on AIH as well as PBC and various other liver disorders that you can see online.

    I've never as yet asked for the Questran (colestryamine) as it seems that it can be very hit and miss as if it can stop the itch. I find with myself some nights it's not too bad, others it is but as yet I've not reached desperation stage and I do really feel for others out there who seem to have it considerably worse than I do currently but at the same time in my opinion it has to be the worst thing we can have. I did have the fatigue during 2010 but at some point 2011 it vanished and I know from experience in 2010 itching and fatigue do not go together at all.

  • Hi krazy-girl

    I was diagnosed in 2006 but did not start itching this time round until 2014 after a very stressful period of time. I has taken from April 2014 to the beginning of this year to get the correct treatment and to have some peace from the itching. I take two sachets of cholestyramine in orange juice - one before breakfast and one almost directly after breakfast. (Here I would refer you to the article in the PBC Foundation's member section of the Bear Facts magazine by Prof.Neuburger in the spring 2015 edition which gives good guidelines. If not already a member it is free to join through the icon above.) Currently I am also taking Rifampicin two tablets twice a day.

    The pack does say that cholestyramine can also be taken in apple sauce (boiled some apples and tried it but did not like it much) and milk (again tried but not acceptable).

    best wishes

  • I have PBC with AIH - diagnosed now five years. The steroids are not for the itiching, it is to surpress your immune system. My itching was really bad when I first started the urso but it has calmed down now. I do not take anything for itching but I do use pure avacado oil before i get out of the shower. It does not take away all of the itiching but my skin was so inflammed from all of the scratching that it made the itching worse and the oil calmed the inflammation helping the overall itch dramatically. Plus, no more dry skin which also added to the itching.

  • For itch, it is best to take the cholestyramine just before and just after breakfast.

    Yours,

    Robert.

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