Hi all,
Hoping for some tips for my itch, haven't had a full nights sleep for weeks now as itch getting ridiculous. I'm at end of my tether with it and even got a fork out tonight to help me scratch. I am taken three sachets of questrain a day just now. I'll try anything ......
Angela xx
I use anti histamine tablets but my itching is obviously no way as bad as yours. Do you know if you can take questran and anti histamines? Do you know if there are any foods that make it worse for you. I do occasionally have a glass of red wine and then the itching is much worse. I know they also suggest keeping your skin well creamed but when my itching was almost unbearable I used to put ice in a dampened tea towel to cool my arms down ot easy if it is your back though.
hi ButerrflyEi,
Thanks for your reply.
Unfortunately just now I have the itch all time so trying to determine whither any food groups make it worse is hard. I have had it bad before then it got to point I could cope , I haven't changed anything yet it has excelled to extreme levels.
I put cream on morning and night with only mild relief.
I am covered in scratches and bruising from it and stating to get me very down .
Angela xx
Hi Angela,
Like you I suffered from severe itching causing blood spots on my clothes and sheets and have tried various types of medication to help stop this.
At last I have as my GP put me on Telfast 180 mg film-coated tablets (one daily) and what a difference it has made. I now only have the itch slightly in the evenings and not at night anymore giving me a good nights sleep.
thought I would mention this as it has been so beneficial. No more blooded sheets to wash!!
Like you I had resorted to using a fork!!
I have found that "Freeze Gel" helps a lot. Just massage in a generous amount to the affected area and leave it to be absorbed into the skin.
boots.com/en/Deep-Freeze-Co...
Thanks for that, will try anything .
Angela xx
Thanks, I will have a look .
Angela xx
I got about 2 Hrs sleep last night, have you tried the mentholated cream? The non mentholated did nothing for me, but the mentholated gives me 2 - 3 hours respite (and a chance to get to sleep)
Charlie x
Hello angel74.
When were you diagnosed first of all? Back in early 2010 when I was 45 I started with the itch and it was really really bad back then. I started on the road to a diagnosis as it was reckoned liver problem. By Dec 2010 when I was by then 46 I was informed I had PBC and started on urso.
Over time I did find that the itch for me started to subside. It's not vanished completely but I have to say that for the last 3yrs it has been far better than it was back during 2010. I can recall when I was at work forever stamping my feet (good job I was on my feet nearly all day and on the go) as they would itch regardless. The itch was pretty much non-stop back then.
I persevered with urso in the beginning even when the itch seemed to be that bit worse. Then I started to have odd nights where I didn't itch at all and for the last 2yrs now I've sort of started to feel prickly early evening and then by 11p.m. I know I do itch somewhat. I am lucky to get a night's sleep but if I do it doesn't wake me up if I fall asleep feeling the itch. Seems for me when I am at rest more than when I am on the move. Pressure points on sitting down tend to make me feel prickly.
Now I find that having a bath early morning is by far better than at night for some strange reason. I think that warm water of the bath opens all my pores and that is how I feel the itch more at night. I have tried putting Epsom Salts in the bath but that only gives me a short-term relief if I do feel prickly and it can make the skin feel dry. I have even used vinegar and also honey in the bath and all that does is make my skin feel good for awhile. I've even used certain body creams (ie generic E45 emollients and someone on this site recommended Aveeno they appear to find they have good relief with) but for me I haven't.
Thing is the itch comes from inside, apparently said to be used bile travelling back via the bloodstream. I have the theory that these used bile salts being toxic to our body leech their way out through the skin to the surface but at the time they react with all the tiny nerve endings and that is why we feel that itch sensation that is one as we all know who itch like this is hard to ignore. I look at it that if it a way of a secondary defence then it is propbably a good thing but unfortunately having the itch isn't.
Questran is normally the thing that is started with but it apparently can take months to be actually seen to work and in lots of cases it doesn't seem to do anything. I've not yet gone down the route of finding out if any meds would help myself as for now I am probably on a scale of 6 out of 10 with regards to the itch. I don't itch all day though I do often feel the prickles, for me it is solely night-time (and we all know that if you can't sleep due to the itch it doesn't make for a following day of being out and about in daily routine as at some point you do feel very tired as I do come 3.30p.m when I am prob one of the World's Best Yawners!).
If Questran doesn't prove to be of much use then there are other meds that can be tried.
I did read on here the other day that someone is taking an antihistamine, forgotten the name now but apparently that seems to be giving relief at night so a good night's sleep can be had.
For me I have food nothing foodwise has actually made it worse since taking urso. I have been having LFTs results that have been coming down over the last almost 4yrs now but it is said that the itch has no bearing on our LFTs nor how we are exactly in PBC with itching or fatigue.
Trying to remain in a cool atmosphere for me is more beneficial as when I feel cool I dont' seem to be able to feel the itch the same. Heat tends to make me feel prickly, even during the hot months I did feel prickly during the day as it was too hot for me.
I am sorry I cannot offer more as myself I have been attempting to figure out how I could perhaps almost wipe out the itch myself in the last few yrs.
There is currently an on-going clinical trial into some med for itching in PBC. If you check out as I did yest the Foundation website on the Clinical Trials section it does mention about this, the results of the findings will apparently be avaialble during 2015. Hopefully sooner rather than later if this product is ever marketed. I would give this medication a go in the future if it becomes available and I feel the need.
Hi Peridot,
Firstly thanks for your reply.
I was diagnosed June 2013 after blood tests and biopsy.
I have been using questrain for a while now , although I have just recently started taking three sachets ,I also use a cream prescribed by doctor.
I have figures crossed they find something better soon.
Angela xx
Hello again angel74 and from someone who also shares the same name so 2 itchers together!
Out of interst what is the cream that your doctor has prescribed for you.
The only cream that I have found temporary relief with has been something that has contained menthol like white Tiger Balm but I dont' obviously use that all the time.
Hope you are fairing well with taking Questran, I believe it is an odd stuff to take.
Have you by any chance requested the free dvd from Liver North (I'll pop on link) all about PBC. I got mine a couple yrs ago and didn't really see much of it, my husband watched it through though. There is a chapter in there all about itching and meds that can be tried.
livernorth.org.uk/pages/fac...
PS You can also read their back issues and the current issue of their magazine that comes out quarterly too. You can find them on same page as dvd.
thanks Perdiot, that's nice of you , will look at it .
Angela xx
Hi Peridot,
The cream is an emollient but it does not do much but ease the scratches I give myself. Questrian is not nice to take, in fact I hate it but I hate the itch more.
Hope you are well,
Angela xx
I'm wondering if a tens machine would help? to confuse the nerve signals maybe, it's just a guess but could be worth a go. I use one to relax muscles but on a very low setting you can easily sleep with it on.
Interesting. If anyone out there has used a TENS then I would be interested to find out if they had the itch of PBC and what happened.
Would be interesting to know if it does work. Xx
One thing that has at least temporarily stopped itching for me is good old witch hazel. Now they come in wipes so you can apply where and when needed; keep some by bed. One time I had terrible itching of my feet. In desperation, filled basin with witch hazel and put feet in; in a few seconds, could feel itching begin to leave; it's temporary, but will keep you from scratching which only makes matters worse.
Hi Christophene47,
I have been on rifampicin for a while now and they control the itch great.
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