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PBC Foundation
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Drainage.

Hi everyone, just thought I'd share my experience. I went in to St James on Thursday for my third Nasal Biliary Drainage, had general anaesthetic so knew nothing about it which believe me is the best way. I am pleased to say that it is draining really well and I am itch free. Not sure how long it will last but I am savouring every minute.

I am on the transplant list as my itch is constant and life changing so this bit of respite is heavenly.

Hope you all have a good week.

Debbie. Xxx

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Hi scratty

from a fellow "itcher" may I wish you all the best to remain itch free and hope your wait on the transplant list is not long.

x

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Thank you Butterfly it means a lot to know you know exactly what I go through, its so difficult explaining to none sufferers that we itch isn't it (if only we could just scratch it). Take care and I hope you are not too itchy today.

Debbie.

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hi again scratty

know what you mean, I tried to explain fatigue to a friend, she said at our age we all get a bit tired! I have not bothered to explain the "itch" :-) I feel so lucky to have found this page on Health Unlocked there are so many lovely understanding people. Not too bad at the moment but later !!!

:-)

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That's wonderful! Keeping you in my prayers. Hoping all falls into place for you soon.

Stella

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Best wishes Debbie.

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Dear Scratty, I'm glad for you! I'm living in Romania...where people don't know too much about this disease...I was diagnosed in 2015 with PBC :( Can you tell me in few words about your itching? How hard is, how intensive, where and on which area is located? I'm very scared about it... I'm confused.. I can't choose when is a normal itch and when is a simptom of PBC....

Also, can someone to tell me about values of analyzes? I have the following results: ALP 334, AST 94, ALT 79, GGT 213, total bilirubin 1.4.....these are the most important, isn't it?

I wish you all the best and thank you very much!

Sorry if my English is not correct, everytime :)

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Hi Karim, its really hard to describe but it is definitely nothing like a normal itch, its inside the body and can not be satisfied with a scratch intact if I touch my skin it makes it worse. It's the bile we produce that causes it. The only thing that works for me is ice packs from the freezer.

I have it on my arms hands feet and sometimes neck and face, I've tried every lotion and potion but nothing works for me apart from the drainage hence why I am now on the transplant list.

Your English is very good, take care and I hope you get some answers soon.

Debbie.

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Thanks a lot for your replay! Are you not using Cholestyramine? For me, it's working...I took 1 bag by 4 g per day and now I reduced by 1 bag/ 4 g at every three days...I don;t know if by me is similar with you (I'm stage 4 by Fibromax, unfortunately...) but I have itching maybe 10-15 times per day but for a short period (1-2 minutes), especially on internal face of thighs and some times on scalp (head)... Well, this is... I wish you good luck for your transplant, God bless you!

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It doesn't work for me, I was on it for quite a few months but got no relief. Xx

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I'm sorry...take care of you!

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Best of luck to you Scratty!

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