It's been such a long time since I was last on here. My biggest problem, like so many of you, is the awful itchy skin! I have tried pretty much everything to deal with this, but nothing seems to work. A month ago, I was put on Naltrexone 50mg a day. But so far, it's not showing any signs of easing. Has anyone else been on Naltrexone, and been successful with it? If so, what dosage was it and how long did it take before the itchy problems disappeared? I just feel like giving up right now.
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madmags
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I can't comment on the Naltrexone i haven't tried it, do you use a menthol based cream on your skin, I find it works for a couple of hours, my local chemist makes up their own brew, I just tried to buy 3 tubs but was informed they were out of stock and will make me some tomorrow.... dreadful itchy night coming up I fee like giving up too. I'm lucky I don't live next to a bridge
Likewise rabjohn rabjohn, temporary relief if anything used with menthol like the White Tiger Balm.
I've often said if eating something like cow dung would give relief from the itch I'd have it!
Hello madmags.
Sorry you too are plagued with this damn itch of PBC. So far I've managed to abstain from asking for any medications to perhaps ease it.
Reading about various meds that can be prescribed for the itch in PBC, did you originally start on Questran (or colestryamine as it is also known in the UK these days). I ask as that is apparently the first line in an attempt to resolve the itch and have also read that Questran can be pretty hit and miss.
I have read previous postings on here about this medication you have mentioned so hopefully someone else can add further.
I have found myself since taking urso Dec 2010 that the itch for me started to subside over time and became confined to night time. I get prickles in the day if I sit for certain periods of time but it is at night I feel the itch that then causes broken sleep as I expect you know yourself. Itching, lack of sleep and then tiredness are not a good combination for us at all with this PBC.
I sometimes find a little bottle of cold water sprayed can give temporary relief. I did bathe at one time in Epsom Salts but again only short-term relief. I find using skin creams on my legs below my knees in particularly seems to make me worse, I think due to the fact that the cream then blocks up my skin pores.
I know last winter my husband had me rub some White Tiger Balm on his bottom back when it was aching an odd time and due to it being night, I found the menthol that it contained sank into my skin on my hands caused some sort of temporary distraction. I have at random times had a right shoulder ache but I now think due to a strain in work year before starting to itch. In winter my husband has rubbed a bit of the White Tiger Balm on that and again it does seem to give some distraction from the itch and at night, can help you drop off to sleep.
I have been on all different things, including questran, but none of them worked. I actually dread night time. I don't have the itch in the daytime, which is just as well really. So far, I have not noticed any benefit of taking Naltrexone, but I will carry on with it, just in case! I will be seeing my consultant at the end of September, so fingers crossed that the itch will be under control by then
Oh how I feel for you as well as myself. Me too now time is pressing on towards mid-afternoon.
I will keep my fingers and toes crossed for you in Sept when you see your consultant again and I would love to know how you are still getting along on the Naltrexone.
How long did you attempt Questran for? I have read that it can take a few months for the itch to improve and vanish with it if it works.
Was your itching worse pre-urso or the same? For me mine was 24/7 back in 2010, reason I saw a GP early 2010. I remember being at work and stamping my feet as they itched like crazy despite being on my feet nearly all day. My feet now only start feeling prickly and then itchy later at night and that goes from my ankles to my toes.
I also find now that I am 51 and the fact skin starts to lose elasticity over the years, if I get the creases from being in bed from the covers, I find especially on my arms at morning, those areas feel itchy awhile. I think it is probably due to the used bile as it is said that causes the itch circulating in the bloodstream and at night especially when we slow down after being on the go all day, we feel it more when trying to relax or sleep.
Hi madmags, I like you was plagued with the itch for 10 years, it got gradually worse over that time, I've been on every tablet lotion and potion but nothing apart from nasal billiary drainage gave me any relief, unfortunately when I had the drainage I also got pancreatitis which I can tell you is not pleasant.
After becoming yet again at the end of my tether with it all I decided to give the drainage another go but then my specialist came up with naltexone, I was started on 12.5mg for 1week then up to 25mg then up to max 50mg and I am pleased to say my itch is almost gone, I have had a couple of days prickling but that's it!!! I can't quite believe it's working after all this time. The annoying thing is I was given this drug by the gastroenterologist I was under where I lived 8 years ago but at a very small dose which didn't work so they took me off it. For me it got better in the third week when the full dose kicked in.
I really hope it starts to work for you too. I had truly forgotten what it was like to live without this awful symptom.
I am having my bloods monitored fortnightly for the next 3 months and at the moment they are not looking good but I'm praying they settle down so I can stay on this drug.
Well from one itcher to another, I can tell you that this itch is a by-product of PBC. Thought to be used bile in circulation that we cannot deal with as we could pre-PBC.
My theory is that this used bile circulating in the bloodstream that is then trying to leech out of our skin as a defense as they are toxic, causes the tiny nerve endings to be aggravated thus causing this itch. It's said that it isn't exactly known regarding the itch so as I've said that is how I think it happens.
i was said to have only had PBC a 'few years' at diagnosis later 2010. I only had the itch and at the time fatigue. My LFTs were abnormal but not alarmingly so. I started urso Dec 2010 and the itching over time has eased off and now confined to night time only as opposed to 24/7 but I still have it. I have thought that maybe the urso causes the itch and due to itching already, it sort of means that improved bloods dull the itch but the urso causes it so you are still left with it.
There was a feature on urso and also itching in Bear Facts from PBC Foundation last-but-one issue ago that I read. Itching is definitely real in PBC and it can cause much debiliation of life. I know myself I feel tired later afternoon usually due to itching later at night. Mine lasts though until 5a.m. Due to broken sleep through the night I am stuck in a seemingly vicious circle. Itching doesn't keep me awake in sleep, it trying to get to sleep when tired late at night that is the problem.
I live in the UK and I was diagnosed with PBC when I was 46 back in 2010. I started itching early 2010 aged 45, had fatigue I never thought much about. Was found to have abnormal liver function tests (the LFTs) and then found to have antibodies the AMAs to give a diagnosis.
The consultant just said to me when I saw him after diagnosis and on urso a couple months that he reckoned I'd started with PBC 'a few years ago'.
My ultrasound July 2010 showed my liver and surrounding organs to look perfectly normal according to the consultant and he even said he could see my bile ducts quite clearly.
My LFTs and the GGT have remained abnormal but they did come down rapidly in the first year of urso and then slowed. They then started going up a bit and then down again each year and would make a wavy line on a graph now.
Personally, I don't really think about stages of PBC. I long since resolved with myself that I'd deal with things as and when and not think about them meanwhile as those things might never happen.
that seems mad to me - I do not have cirrhosis but 3 years ago the itching went from little to a madness, I am still slowly working my way through alternatives before seeking medical help.
I forgot to say that my dermatologist gave me a cream that I found helpful. I'm based in the US but it is called Nystatin and Triamcinolone Acetonide Cream USP.
The only thing about Nystatin was that many years ago, back in the 1980s I had a bit of a bout of thrush and was given cream and tablets (Flagyll) for it as Canesten that you can now get over-the-counter here in the UK was useless.
When my granddaughter got thrush (she is type 1 diabetic so more prone) Canesten wasn't proving useful. I informed my daughter to ask for Nystatin. Apparently it isn't readily prescribed here and looking at the letters USP at the end of your mention, could it be confined to the US only?
(I Googled your cream, seems not available in the UK but I could be wrong. Wondered what the other chemical was, apparently it is steroidal.)
I have had just about every anti-histamine available. I stopped them, but found that the itch got even worse! So, am now taking Chlorphenamine. It doesn't stop the itch, but it does help a bit
Apparently anti-histamines don't work for the itch in PBC. I was advised to try Piriton back in early 2010 when I started itching and before the GP got the first blood results back. I bought a pack over the counter, they made me feel very sick for a couple days and did nothing for the itch.
The tablets I got weren't of a drowsy effect and I have read on here previously that some take them that give the drowsy effect so they can sleep at night and get by through the itching.
Can you tell us what anti histamines you are taking.
I used to be okay on the one a day from the supermarket. then moved up to Pollenase, I am now trying (just 5 days so far) Phenergan 25mg and Eurax but I am still itching but no where near as badly.
I've had itching for over a year before they found out I had pbc I was only diagnosed a little over a year ago but knew something was wrong for over 5 years
My itching got so bad I was prescribed a medication which I was severely allergic to ( can't remember the name).
But now I am taking cholestyramine
It's a powder u mix with juice, water, soup whatever u wish
I take it now once a day it apparently combines to your bile and removes IT from your body which is the cause of itch
It has been like night and day for me.
It works so good I haven't had an itch in over a year
I have been on hydroxyzine for two years now and it has completely taken my itching away. I am Stage 4 and the itching was all day. Ask your physician about trying it.
Good luck!
Calogia
Hi everone.
I had the itch and was prescribed Questran, after a few monthe the itch stopped. I carried on with the Questran a few more months and when I came off the itch did not come back. About 4 weeks ago the itch started uo again so I am on the Questran, hoping it will work once more.
I wish you could all find something to stop you itch as it drives you nuts.
This information might just help someone. I had horrendous itch for two years which I mentioned to my consultant every six months when I saw her/him as I had disturbed sleep every night and was using a back scratcher most of the night causing blood spots from the itching lumps. I was prescribed many different types of medication etc. none of which worked. Last month when I could not stand it any longer as other areas of my body itched (mainly at night) I went and saw my GP he had one look at it and said I had a severe infection and gave me penicillin and the cream Aveeno to use twice a day. Wow, it all worked. I hardly itch at all now and cream my body twice a day to stop any dryness. I feel like I have a new life now. Why O why did my consultant not look at it and give the same solution but just keep prescribing useless treatments. I can only assume because I have PBC she did not bother to look at other avenues for the persistent itch I had, which is now minuscule, the itching spots I had are beginning to fade now and I hope my skin will return to looking almost normal. God bless my GP. So don't just presume it is the PBC itch alone.
So do not give up on this madmags as I know how distressing it can be. x
I've tried Naltrexon and it made me feel very groggy and I slept the entire next day. I didn't like it. My dr suggested I cut the pill in half and try that. I give up to easy. I try to avoide taking it.
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