Help!!

[evelyn1]

Im currently on transplant list for Edinburgh, have been in n out my local hosp since jan every week-10days with liver pain, bleeding varices, nausea and the dreaded itch. Tonightbim really struggling again n itch is driving me crazy, no meds have helped. I seem to get really bad itch then the pain gets really intense and begin to be sick, anyone else suffered like this or any ideas on what I can do about itch, could easily take a knife n sceape the skin off its that bad, really dont want anothervlong night at a&e to be admitted as all they do is give me morphine fluids and put on my local cinsultants ward, he himself doesnt know whatvelse to do but I can't go on like this again tinight. Thinking of calling my coordinator at Edinburgh but know she wont be able to do anything for me tonight

[Bookworm7]

Hi Evelyn,

My god lady it sounds terrible!!!!!.....I suffer the itch (but none of the other things you mention) and know how you feel, the only way I get any relief is freezing my skin with ice packs, I too have had that awful thought about cutting myself to try and get rid, unless you've had it nobody really understands,

I hope you get some respite, my thoughts are with you.

Debbie

[hotdog]

Hi Evelyn

How awful for you having all these problems at least I only have the dreaded itch and like you no medications they have given me have helped. I do have a back scratcher which I use with gusto to get to my back but do itch everywhere. In desperation in the night I am often up and soak a towel in cold water to slap round me. This does calm it a little until the towel heats up. In the morning there are blood spots on my night dress and sheets where I have scratched. So I fully understand your thoughts of scraping off you skin.

I do hope you get your transplant soon as I often read on here how it helps vastly.

Even a reduction in the itching.

Feeling for you.

Chris x

[Hidden in reply to hotdog]

Apparently you can lose the itch altogether after transplant and all being well and the PBC doesn't return you can remain that way.

I've not had a transplant, I am pretty much like you hotdog, just this damn itch and only take urso.

I have read a few posts on here in the past where they have stated that the itch has vanished following tansplant.

[teddybear7]

So sorry for you I complain about the itch but it really can't be as bad as yours honey. I do the opposite & have a soak in the bath. Then plaster e45 cream all over it seems to be the only relief for me. All the best T.xx

[butterflyEi]

As with other contributors above I have nothing like the itch that you are suffering so I have no idea if the following will be of any use. I have bought a pair of gloves from Boots that exfoliate, I think they were about £1.00. I use them in the shower all over then when dry(ish) cover myself with Doublebase Gel, on prescription but can be bought over the counter. I take the drowsy type of anti histamine 4-6 a day depending on the itch. When bad, as with other contributors, I get the skin as cold as I can and when really bad like all of us I would like to cut it out if I could!

best wishes to you, hope you manage to find something or a combination that suits you.

One other thing that has recently been suggested to me is that I try to drink more water, silly amounts really (3 litres) in the hope that it will help flush the system, you can only do this when at home or near a toilet as the constant need to pass the water can be urgent.

[PBCRobert Partner]

I sent you a private message last night with my phone number. Please check you have it. You can call me anytime- ANY time- if you need to chat or are struggling.

If I am free, then I'd be happy to see if we can help.

Robert.

[exy21]

Anti histamine and questran. Cold like previous replies and wear cotton gloves at night. It stops me breaking the skin when I'm sleeping.

[cazer]

Oh Evelyn you sound like your in a real pickle. My pbc is stable at mo but when I was first ill I was pregnant and had glandular fever at same time so my lfts were pretty bad.i spent most of every night wide awake itching weeing and sat on top of stairs

...just to get cool...not sure how it's possible to have hot hands and feet and be cold but it was.i took an old hairbrush to the soles of feet and palms of hands ...it was only relief I could get for those bits as the skin is thicker...while I was scratching those bits it took my mind off other itchy bits (all of me) and at least its nigh on impossible to break the skin here.things calmed down once I had my son but I was also being sick as soon as I tried to move around whilst pregnant which I think was just too much on liver. Just walking slowly down the stairs would make me chuck up

I hardly dare to offer advice but the only thing that sort of helped at that time was to assume I would be awake for most of night. I got husband to do a flask of tea..make sure I had books magazine and had low voltage bulb on lamp

Put tv on quietly and probably by about5/6am I would fall asleep and sleep till 11 at least that way the expectations of gping to bed and sleeping were lessened and somehow that helped!have they given you painkillers in tab fprm?I now take antihistamine chlorphenamine which does not get rid of itch but just makes me slightly drowsy and helps me dose off but I think it would not be any use if youre symptoms are so pronpunced.only other thing that helped me was to keep cool/cold keep feet out of duvet or use just cover...not nice to be chilly but better than more intense itch.best wishes and hopefully a speedy call for that new liver.xxx

[Hidden in reply to cazer]

Hello cazer.

I itch at night and I find that once I go to bed, not long after I'm in and the prickles start all over again ready for the itching to begin (it somehow vanishes on walking about, seems to be at rest it rears its head, the worst possible time at night after being awake and on the go all day), I find I need to get up and pop to the loo.

I am not sure but since I started taking urso Dec 2010 I have noticed that I tend to take a trip to the loo a few times in the night if I am awake and itching. Not sure if it has just become habit or whether it is some sort of ritual to deaden the itch briefly now. Some nights I can go to bed not long before midnight (any earlier and it is more torturous) and then within 10mins pop to the loo and then i often do manage to drop off to sleep but I wake suddenly hours later, anytime from 1a.m. to 3a.m., get up, pop to the loo and then go back to bed. Sometimes I can return to sleep, others I am awake a couple hours which then rolls over to morning when I become dead to the world then through tiredeness and struggle to wake up.

Being cold does seem to give relief as opposed to being warm but I still don't think it is good for the system being pretty cold all the time, especially in a house that has no heating as in central heating through the winter months. I always leave the window open at night in the bedroom that is quite near the bed even in winter due to this PBC now. I feel sorry for my poor husband, I ended up having to give him a hot water bottle when it was winter due to the fact I cannot stand bodily heat when I go to bed anymore with this itching lark.

[cazer]

Hi again Evelyn forgot to say only thing I could keep down and face to eat was custards creams or rivh tea biscuits think its something to do with sugar and carbohydrates. I'd still ringcoordinator as at least they understand the situation as they must deal with similar patients. ..talking is always good.Don't worry if you end up nocturnal ..

I did and at least the nights didn't seem quite so desperate if I treated it as more like day.x

[evelyn1]

Thanks everyone I have contacted my co-ordinator and she has managed to get me an earlier appointment with my consultant in Edinburgh,still have until next Thursday to suffer but hopefully I be able to get 1 of the only 2 things that I have not already been tried with. Rifampicin which she described to be as the last of a bad lot and Plasmapheresis. I know these are both harsh but Im at the stage something needs to be done as I can no longer go on like this.

Trust me I have tried all these ideas and yet still nothing helps,Im at my wits end and cannot cope for much longer,and yes Im a fighter but this just seems to be getting on top of me and not giving in.

Thank yous all once again x

[cazer]

Glad u contacted coordinator as you say when you get desperate enough its worth trying anything. I would say I'm fighter but sometimes it just all gets too much.can only sympathise with where you are with liver but this ylast year lve discovered I have stomach ulcers my prolapse (ladies bits)has given me a lot of grief ...an iron infusion for anaemia gave me flooding periods so for few things I do go to I wasn't sure if o could go withput an accident. This has now calmed but I'm supposed to have another iron infusion because surprise surprise I'm anaemic again! !!l just don't think I can deal with much more but your difficulties Evelyn have made me remember/realise how much worse it can be! If you want to chat im usually awake in the middle of the night! !!best wishes. Cazer.xx

[mojo62]

Hi Evelyn,

So sorry to hear that you are having such a difficult time and pray that you do not have to wait too much longer for your transplant. Just remember that we all on this site are thinking of you.

Morag

xx

[Brummi]

Hi, I am sure we all know that feeling. Think positive and I'm sure all will turn out ok.

[Jojowen]

Good that you contacted the co-ordinator. I do get that PBC is slow moving and not life threatning until the later stages, but I don't feel that drs understand what the hoplessness of having all these (in theory minor) symptoms does to a person. The fact that you've had enough is good. You need help now! Sometimes I wonder what treatments would look like if the female- male ratio of PBC was different... Don't give up, keep pressing for help. Hopefully, the transplant will change everything!

Take care,

J

[cazer]

Evelyn is this Thurs u go to clinic ?

...hope you get something to help.love and moral support to you.

Don't be too brave...let them know how you feel. ..sometimes its worth getting upset.xx

[evelyn1 in reply to cazer]

Yes it is this week that i go,thankfully just a couple more days now.

Thank you x

[cazer in reply to evelyn1]

Hi Evelyn you awake?cazer here too tired to be awake but also can't sleep how daft does that sound.how are you tonight. .have you given up on sleep altogether?wind n rain has finally stopped so maybe in a bit I might get some kip.husband also snoring! !!! That makes me feel cross...know I shouldn't but somehow makes it worse that I am wide awake!!! Think ive been to bathroom 6times in 3 hrs ..don't really need to go but think I do! !! Take care .cazer