Hi can anyone help. Itching does it come in... - PBC Foundation
Hi can anyone help. Itching does it come in the form of an allergy type itch and also what do you use for the itch?
Hi, I am newly diagnosed PBC AIH overlap. You should ask your GP or specialist for some urso.....this helped me with the itch. The itch with PBC is not an allergy it is down to bile salts in your blood...at least this is what I grasped from a consultant. I don't know a great deal about these diseases yet as I am still researching....but I would certainly go see yoiur Gp and try some urso.....
Thanks coniefused, been on urso for years now and not had problem with itch until last couple of weeks. It seems like an allergy itch somehow to me all around chin area, neck and forehead. Will see doctor today if poss. Thanks for help
Hi Shirleygreen the itch i can only describe as feeling like there are hundreds of little beings crawling around under ur skin but even when u do give in and scratch it doesn't go it needs medication. you should ask ur hep dr about treatments asap if u r sufferring with itch. horrible symptom.
There is a lot of good information in prior posts. May I suggest that you do search for itch.
I am on Sertrolin, an antidepressant which has helped tremendously. Itching is now just an occasional nuisance.
Hi, I've had the itch since I was diagnosed eight years ago, I was in hospital with Pancrititise in April and since then no more itch but I also take two different pills four times a day to keep it at bay, if you want the names of meds let me know. keep well.
Hi Derann
Yes please would like to know name of the two different pills you take?
Hello Shirleygreen.
I originally started with the itch in 2010 and was then diagnosed with PBC towards the end of that year.
For me this has been the most irritating thing with all this. If I didn't have the itch I'd not even think/know I had PBC.
Apparently it has been put down to salts in the bile and en route back to the liver after part of the digestive process they cause the itch as been sort of explained that it is a way of getting rid of them via the skin but it causes a reaction (I refer to it as a lot of wasps having a go at me or a tumble in nettles!). I personally reckon if this, they are reacting with the tiny nerve endings as they are sensitve, that is what causes the itch but that is my opinion.
I don't know how mild or severe yours is (I thought mine was more severe when I first started but a doctor didn't offer anything for it unlike after diagnose), but I've took the decision to try to get on without additional meds (I'm only on urso) for the present.
I've tried altering various things in diet and have actually found that altho' I have periods of no itch (I only itch in the evening, normally starts around 11p.m., ends around 5a.m), I still haven't a clue what I may or may not be doing when I have periods of none!
I have put vinegar in my bath and that seems to help somewhat but I try avoid a bath at night as for me find it is best of an early morning on rising.
I did read on this site that Epsom Salts are good. I have actually tried those (paid just over £1 in Boots for a small pot that I can make do for 3 baths plus Holland and Barratt do one that is specifically made up for bathing, Eco Bath, large cardboard drum), they for me give me the same results as vinegar. Have read Epsom Salts have been reputed to draw out toxins from the body via the skin so maybe that is why they are of some help?
Other than that, can't suggest more as me too as well as lots of other here know exactly how you are feeling here. Be good if we could at some point crack it and be itch-free.
Good luck as you'll no doubt now have a bit more info and the ones who are on differing meds for the itch (I was informed I'd be started with the Questran first in event want something), well they could perhaps fill you in more there what to expect.
Hi Peridot was just reading ur reply to shirleygreen like you I find itch so so dreadful at night although i have it also during day sadly but def not to the same extent as at night. The questran does help I have been taking it for 10yrs, i was initially put on basic questran but had major bowel upset and had to go on the light formula which def didnt upset bowel as much. Like any drug though it does take your body wee while to adjust to it but it definately does work trust me I have tried everything in last 10-11yrs! My theory on it is that when ur stomach is empty during the night and you are not moving around to the degree u r during the dy then the bile builds up greatly and that makes the itch worse. I find on nights when I have it the worst I usually get up, eat something relatively healthy eg. a banana r slice of bread n butter and take a questran it does settle albeit sometimes only an hr or two helps the itch. I think even just getting up moving, going to the toilet helps shift some of the bile. I hasten to add up until this past yr r so taking the questran at night b4 bed used to work better than it does now and my theory on that is that its effect on my body is just not as good anymore I think this is same for most peope taking long term meds. I have recently had to give up working ass I simply cannot get through my work day anymore due to no solid nights sleep which has really impacted greatly on my life but sometimes u just have to face facts and listen to what ur body is saying not always easy. All this has just brought into my mind a couple of questions i must post re meds. I dunno reading this back if it is of any help hope it is.
Hi Littlemo
Thanks for your reply. When you say" major bowel upset " do you mean constipation because I only took one sachet yesterday and had that problem today. So now dont want to take any more! I guess if this awful itch goes on I will have to go back to the GP and ask for the light one.
Hi Shirley, no my problem was that i had a lot of diarrhoea but it may just have been the formula once i switched to the light formua it was fine once my body got used to it can be a bit crampy in tummy to start but it does all settle. The fact that ur itch is around your face area suggests it could be a localised allergy maybe, have u started using anything different on your face and neck recenltly eg. cleanser, moisturiser? Not saying its not pbc itch but I know I have very sensitive skin any over the years have learnt to go for perfume &/ alcohol free beauty products because got itch from ones with these things in them. My itch has always been mostly on hands, arms, feet and legs can hit other parts of body too but find these areas are worst. Recently however I have been having it around my face and neck. Did the piriton help at all?
Morning Littlemo
Thanks for reply. I stopped the questran after one sachet - cant be doing with the constipation as well! My gp did tell me it could cause diarrhoea. Anyway have asked for the questran light now. I have been taking the piriton every four hours yesterday and it seems to have taken the itch off a bit so will continue doing that for next few days. I did get a puppy about a year ago and my first batch of face itch was shortly after that but she is supposed to be an allergy free dog. I have sensitive skin also and try to go for shampoos paraben free and face products for sensitive skin too. Thanks for help much appreciated.
Agree with you littlemo regarding that the itch seems to alleviate (totally in my case) when up and moving about BUT with this PBC thing and itch, bad enough at times feeling tired later in the day to actually keep on trucking.
I know a few wks ago when I was packing to go away (always last minute for me, always has!), because I spent the evening until around 11p.m. and then was still up and down as I then couldn't seem to sleep (we left at 2a.m. as a 6hrs drive Lancs to Devon) even tho' started to feel tired, I didn't have the itch, nor when sitting down in car enroute (I was passenger).
It does seem to be the case for me anyway, expect others too as you also mention about moving about.
The tricky thing now is that we can't really be on the go 24hrs per day if this is the case as we all need the body to rest for certain periods of time but I definitely know that itching and fatigue aren't symptons to have together like in PBC.
My first late husband was asthmatic and it was always bad at night if he was having a bad time with it. I came up with the theory long ago with asthma and a lot of other illnesses and conditions that due to plants also taking in oxygen throughout the night and giving out carbon dioxide, the atmosphere is definitely different and maybe this has some sort of impact.
Hi Peridot yes totally agree on the air quality at night thing too and also ( am sure someone out there with a more scientific mind can fact this one) that our body temperature alters in the night to aid rest and sadly for us this means we start to itch, another of my theories sometimes wish had the brains , resources and money to research all these theories myself!
Thanks Peridot
I am quite new to this site so now sure whether I should be replying to everyone that has kindly answered me or try and send one reply to all but not sure how you do that? Everyone seems to have this itch more during the night and mine is much worse during the day. Have gone back on the Periton (antihistamine) because the Questran the GP gave me yesterday caused constipation and I only took one sachet instead of the two she told me to take
PS Shirleygreen.
If you want to personally message anyone, click on their username in blue and then site will show you what they may have of a profile.
You then hit the 'message' beneath their picture and can use like email.
Out of interest I have found that at times certain questions/replies warrant more of a personal touch so then I normally post a reply for everyone to see but also then do a personal one.
Good luck and welcome.
Ok thanks for the info Peridot. Isn't it good to be able to communicate with people who have this same horrible problem?
I have read here in the forum a friend indicating Zirtec . Me too help. Have you tried ?
Hi Shirleygreen, I'm new as well. I was wondering whether you reply to everyone individually or do a reply to all?.ha what is the etiquette?x
Sorry i am not sure i just go in this little box and type
I have just this year started with the itching, after having had PBC for 15 to 20 years. I am using Cholestyramine and Ursodiol. They are of not much help, because it's still breaking through. Using Sarna lotion helps for a couple of hrs. I also use Gabapentin to sleep if all else fails. I don't like this drug though for it makes me feel groggy.
Magnolia
Hi Magnolia the itch is a bitch! IT could be that you are not taking enough of the the questran. PBC foundation folk put me right on that one( which reminds me have to write or ring them to say big thank u for all their help and support specially past yr). I take one sachet of questran b4 and one after breakfast and one at night after light supper (bowl of cereal/toast). This works well enough for me for the itch for many years I hope it works for u, most annoying symptom of this conditon. P.s. As have told others it does take ur body wee while 2 get used 2 it like any medicine, can take up to 4-6 wks if memory serves me rite and that as all u no (memory) is another less discussed or mentioned feature of pbc. bfn Magnolia take care of u and urs
Thanks Littlemo, My dr told me I could take Cholestyramine 3 times a day. But it's causes constipation with me, which I had never had a problem with before. Another problem is I'm taking 3 ursodiol a day, 1500 mg. I think I read to take, the two drugs, 4 hrs apart, and with food. I know it's more important I take the ursodiol, so I make sure I take it.
Magnolia
On Sertrolin (an antidepressant) for the itch. It certainly helps.
