PBC Foundation
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Itching and me

For some of us this seems to be a difficult problem to deal with and I am hoping someone may have the same experience and can help with my question.

In the late nineties I had severe itching which the GP put down to possible depression, SAD or even empty nest syndrome - difficult when I had no children! By 2006 I had my diagnosis and the itching magically disappeared. In 2014 my mother, who I had looked after at home, died and my itch came back. I also learned that year that my husband had a cancer which is now well under control. So I put the itch down to stress and tried a different anti histamine even asked the GP who gave me a stronger anti histamine and then another which did not agree with me and that brings me to July this year. With a change of surgeries I asked for Questran, (colestyramine) to be prescribed. By October the colestyramine has made life a lot better but my skin still crawls in some places and burns on my forearms. I have seen a specialist privately but because I am self funding he suggested that I return to the NHS as certain tests he ran were very expensive. He suggested that if the Questran did not work then the next line of defence is Naltroxene. I asked the GP for this last week (to be honest the conversation with her was quite frightening with what could be dire consequences of taking Naltroxene and her mentioning that if she did not highlight possible problems then I might sue her) but the misery of this itch made me stick to my guns. I have now had two days of Naltroxene and I have not noticed any improvement. Did I think this would by a miracle - yes I did!

Is anyone taking Naltroxene? Do you take it as well as the Questran? If you take Naltroxene what dose, when do you find it best to take - a.m. or p.m.? How long before the drug takes effect?

I am so tired of this so called itch - for me it is not really an itch but constantly being aware of my skin in an unpleasant way - it seems to consume my everyday. As to the fatigue at the moment I can manage it, it is certainly better since I have been having vitamins B12 injections. I have a good healthy diet including nuts and seeds, fresh vegetables, protein but little red meat.

best wishes

5 Replies

Hi ButterflrEI.

I have the itch, it is unbearable for me now, nothing works, I've tried everything and believe me I mean everything! Even tried acupuncture uvb treatment every lotion and potion you can think of and nasobilliary drainage which does work but only while the tube is draining, I am at the stage now where I have an appointment with my specialist to talk about transplant, very scary.

Anyway I digress, the reason for my reply is your question 're Naltrexone, this is a opioid inhibitor and should not be just thrown at you, you must understand what it's about before starting it, I took it for quite sometime starting with a quarter dose (7.5) for a week then half for another week then the full 30mgs there after, I was told to take Monday to Friday then have the weekend off.

I must add it worked for me for a while but the side effects were sometimes unbearable, for a start I felt spaced out most of the time, bloated and a constant fuzzy head. My specialist advised a tablet holiday after a couple of months for 2weeks in which time my itch came back but all the side effects subsided. Then back on them again at the same dose as before gradually increasing it again over a couple ofweeks, this went on for about 8 months and then suddenly it stopped working for me so I came off it for good.

Hope this helps.

Debbie. Xxx

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Hello Debbie


Thank you, your reply has helped settle some of my doubts. I have been started on 25mgs and thankfully so far have not really noticed any symptoms other than my tinnitus being very active just now. I am to have a blood test in about 7 days to make sure it is not causing any damage. I hope that if I am on it for say a couple of months that it might get me out of the habit of the "itch" so sort of switch it off but I think it may be a vain hope.

The specialist did recommend a cream with menthol in it. The prescribed cream from the GP is less than 1% so it useless but I bought a cream at 2% menthol which is helpful for a short period but it really makes my eyes water.

In my effort to find out about Naltroxene I have come across information about a low dose naltroxene (as low as 2.5mg) which is used for MS and RA amongst others so it has made me question the 25mg dose.

I hope you can find some resolution to the problem of the itch I can imagine the prospect of transplant is daunting but I have read of those who have found it gave them a new lease of life.

thank you again

best wishes


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You guys. Just out of curiosity, people with autoimmune, will it not attack the transplanted liver at some time? Sorry if it is a stupid question?I am nearly 76 years. So I have to sit with the itch and fatigue. Was fatigue free for years, but all I now want to do is lie and do nothing. By the way, my liver enzyme results are looking better than in years, but I feel worse than 7 years ago. Must have to do with the age as well. Thumbs up for all


Hi Rockie

I am pretty certain that I read somewhere or maybe heard Professor Neuburger in the video on the PBC Foundation web site that it has been known for the itch to return after transplantation. Perhaps someone knows this for certain and can site he reference for it.

Rockie, have you had your vitamin D and vitamin B12 levels checked. I am 65 and with age was adequate for VitD so supplement with a spray under the tongue through the winter and my VitB12 deficiency turned out to be pernicious anaemia. It may be worth getting yourself checked.

best wishes


ButterflyEi Thanks for quick response. They checked Vit D levels ,but I have not been to the GP for results, because some of the results shocked her so much that she booked me in to hospital and I was seen by a Specialist Physician. Will follow up. Thanks so much

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