A cure (possibly temporary) for the dreaded itch

Hi, I am 45 and diagnosed with PBC ten years ago! Last summer I was signed off my work as I couldn't cope any longer - I had tried every medication possible for the itch, Naltrexone had worked for a year but suddenly stopped. I was referred to the Liver Transplant Unit and it was suggested I try Plasma Exchange Treatment. Very intense to begin with as it's 5days, then down a day every week until I was going once a week, now after seven months I go every two weeks and I have my life back, I still take 10mls Naltrexone at night but my itch has gone!! I am quite small so my treatment only takes two hours, I can now drive to and from the hospital but have to come home for a sleep afterwards as it does make me tired and a bit nauseous. I just wanted to share this with all the sufferers of itchy skin, it has completely changed my life.

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  • Wonderful news, Jill! So glad you're getting some relief. I do not have the itch yet but will be asking my doctor about this for future reference. Thanks for sharing!

  • Moepag, you are very welcome, it's something not many people know about, there is a man at the unit who has been getting it done for 30 yrs - so it's great to know that as long as it keeps working they will keep doing it! X

  • Thank you for the information. I am from the USA and have not heard of Plasma Exchange Treatment and will look online for more information.

  • Plasmapheresis is the medical term!

  • Out of interest Jill68, are you having this treatment on the NHS?

    I have heard of it on this site previously but didnt' take much notice.

    Am I right in thinking that before this would be considered for PBC you would have had to have tried Questran first, then move up to something else to see how they may help first?

  • Hi Peridot, yes I get it through the NHS, I first tried quest ran about three times then Rifampicin, then an antidepressant, can't remember the name of it, then Naltrexone which was great for a year - has taken about three years to get to this stage, other option was a liver transplant! X

  • Hi Jill This is so very helpful I have also tried quest and am now on Rifampicin (3mths) which does not seem to make any difference. I am now booking an apt at the GP to request if I can try Naltrexone which you mentioned to see if this help. Only as you know the itch drives one crazy and I am fed up washing blooded clothes!!! So thank you for all the information which I have printed off to show the GP.

  • Hello hotdog.

    I've had the itch now for over 4yrs., that is how I came to be diagnosed with PBC.

    I have found that taking urso has helped some but not overly-much truth beknown. It sort of shifted my itching to be more confined to just night. Can't say it is good starting to feel prickly by 9p.m. every day and then by 11p.m. knowing that you have the itch. If I am unfortunate not to go to bed and go to sleep I find myself itching - mainly legs below knees and feet/toes - I can be awake for hours which then results in falling asleep not long before needing to rise and can and does have a knock-on effect in the afternoon when I feel tired.

    Just had a weekend away for my 50th birthday and being in an apartment that had heating I really did feel the prickles and then the itch. For the 2 nights I got little sleep and yesterday morning I struggled to get up as I had only been asleep under 2hrs. I couldn't keep my eyes open on the drive home (I wasn't driving) and a short (20mins) 'cat nap' had to suffice. I tend to get so tired after days of little sleep but manage to keep going during the day on the go (I don't actually get fatigued) and last night I did sleep for many hours so hoping that again tonight is the same. I find it beneficial to myself if I can sleep most of the night, it gets by another night without noticing the itch!

    I've yet to give in and request something for the itch. I just don't want to have anymore medications, urso is enough for me though I don't really know I am taking it these days (unless a pharmaceutical change).

    If I got desperate I know I'd have to ask for something but it seems that with medications for itching in PBC it can be very hit and miss. Some it works, others not but if one is willing to give something a go then if it does work.....

  • Hi Jill,

    Thank you for the info . I am looking the Plasmapheresis treatment up now. I am interested in what Dr. Google has to say about it. I would do anything that would help!

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