Very Frustrated

This afternoon I went to my PCP. Just to "see" if I have something else besides PBC itch. She said no bug bites and was probably the liver disease itch. I asked for prescription of the Chlostrymine. She wouldn't give it to me, because it wasn't her expertise. My GI doctor won't send a script because I haven't been there since September and don't come in till the end of the month! I am very frustrated because no one will help me and feel like the quality of my life with this itch is just going to go downhill I'm just venting here because no one else understands about this but my supporters here. I am using Saran lotion, and Benadryl.

11 Replies

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  • Hi krazy-girl, is this medicine available only with a doctor prescription? In Romania, for example, we couldn't find it....but I buy personally, from Germany. Is your itching severe? can you tell when is more agressive, day or night time? For me is during night... On which areas from your body is located? I'm very scared about this, close to a depression...every small itch, from a mosquito maybe...I put it like a sign of my illness :( ... Sorry if my English is not very good...

  • Hello katim.

    I am pretty certain colestryamine or Questran (brand name) is only available by doctor's prescription. I am in the UK and a GP could prescribe it (I itch but as yet not asked for anything. My itching changed pattern within 18mths of starting urso (diagnosed December 2010) and I tend to itch later at night and until around 6a.m. Some nights it is unbearable and I get broken sleep and then I can hav a night where it doesn't seem so bad, I am tired due to several wakeful nights so I sleep and 'miss' the itch. If I was desperate and it went on and on being unbearable night after night, I'd be turning to a doctor for something to try).

    Colestryamine was originally designed for reducing cholesterol I believe just as our urso was for dissolution of cholesterol-formed gallstones but now they are both used for PBC.

    I am not sure in other countries how prescribing this works.

  • I usually wake up at night each time I have to scratch. Some nights I am up 2-3 hours before getting back to sleep. Yes Chlorestrymine is by prescription only. I am hoping to get it tomorrow. But the night are harder than daytime although I still itch during the day too. Krazy-girl

  • Hi krazy-girl

    I am so sorry to read that you have met a brick wall. How I know your frustrations so well, I have lain in bed crying and going through winters without long sleeves (my itch is mainly on my arms) is not funny but at least I am in the south of England where winters are not so harsh.

    I started itching in 2014 and it has taken 3 years all bar a month to arrive at a relatively comfortable body. Here in England we have an NHS under pressure so waiting times for specialists can be quite long but I now have a smashing specialist (since January this year) who is a caring young man. I now take Cholestyramine twice a day and Rifampicin twice a day as well as the URSO.

    As a temporary option this may help - under the care of a previous surgery (I moved) I was given Cetirizine two tablets twice a day. Here in the UK it is an over the counter anti histamine which may help you rather than the Benadryl. It gave me some temporary relief and I think it helps a body sleep. I do not really think that anti histamines are the answer to the PBC itch but it might help you through the next month.

    I do not know Saran lotion I use a 2% menthol derma cream.

    Can I also refer you to a back copy of the Bear Facts magazine to be found in the members section of the PBC Foundation web site. In the Spring 2015 edition Professor Neuburger has written a clear and concise article on itching. If you can print it off and show it to your PCP I wonder if it would give her the confidence to get you started on cholestyramine or perhaps she could telephone through to the specialist you will see at the end of this month and gain his permission to prescribe the cholestyramine (Questran or Questran Light).

    If you are not a member of the PBC Foundation you can join through the icon above. It is free to join.

    I do hope this is of some help to you and please know that there are many out there who can empathize with you.

    best wishes

  • Well said

  • Hello krazy-girl. Given you are in America, there is pbc.org I believe. Have you tried contacting someone there regarding acquiring something for the itching.

    I know my thoughts are I would like to give the itch to doctors, just for a few days or so, then it would be known exactly what it is like. A doctor might say we can develop an itch with a liver disorder but at the end of the day not one of them know what it really feels like day in and day out. As you state, you have to have it to really understand how it is.

  • I understand how you feel it's unbearable I had to beg the dr to give me a script and the chemist if I could buy them they wouldn't I got them eventually when I seen the specialist after the liver biopsy results . They worked after a few days of taking them for a few years till my pbc progressed . If I were you I'd ask the doctor to phone your specialist and ask if they can prescribe them sooner good luck no one seems to understand how bad the itch is unless they've had it themselves . I've since had my liver transplant and the itch goes straight away .

  • It really is the biggest b***h in the world. I haven't found any meds that help and my itch is very localised to my back ofcourse where I can't reach. My trusty backscratcher goes everywhere with me and I jump into public conveniences and scratch away if it's bad. I have found extreme moisturising with golden oil quite good so that's daughters job when I see her. Not so easy if your itch is all over. I wondered what that Pain Relief Spray might do. I ll post if I try it. Keep the chin up meanwhile and wish a good dose of hives on medical practitioners who are unsympathetic x

  • Saran doesn't touch it for me, benedryl maybe helps. Try exercising hard,till you sweat. I do hotyoga. Then take bath with epsom salts, rub your body with loufa gloves and sugar scrub, then try witch hazel and finally organic skin lotion. Works for me

  • Never thought of witch hazel. My head (scalp) face and ears are the worse. I will try these things! Thanks all!

  • i get the idea of no one understanding but people here - I feel that way a lot!

    I use clariton for my itch and it helps take the edge off. Anti histamines are one of the suggested things to try for the itch. The pharmacist suggested Clariton only because it was the non drowsy one (I'm tired enough as it is all the time).

    Should you make an appointment to go see your GI doctor again so he can give you a script? I hope you get it sorted out. I've had days where I'm itching all the time and I can think or focus or remember what I just said or what was said to me! thank goodness I don't have many days quite that bad yet - but wow it was horrible so I feel for you!

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