My PbC was diagnoswd in 2004. Not many symptoms since except for the tiredness. Told in hospital that my blood results were in "normal limits" although I am now seen every 6 months, have an AFP test and an ultrasound every 6 months too.
First went to Gp with complaints about my legs, discloured, slightly pitting and itchnig but after diagnosis ( and biopsy) and starting to take URSO this seemed to ease and improve. However in the last few weeks I've started itching. Mainly on my back, worse after my morning shower, and again in the evening. My skin seems to have become very dry too. Just as well I can';t reach the part easily or I'm sure I'd scratch until it hurts, so I have to rely on hubbie to scracth ( although he is too gentle!!!). Do other members think I should contact my consultant early or wait for my next appointment?
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cazzi
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Bit of a Catch 22 situation this. Maybe you might be best seeing your GP first and he/she can advise you here.
I know itching is part of PBC along with tiredenss and these are apparently the 2 most common symptons of PBC and for many of us (and I too) the itching tends to be the reason that prompts us to see a GP in the first place. The tiredness at the start seems a bit of a more normal thing and we do find excuses for it but the itching is different as that isn't exactly deemed a normal everyday thing unless you have PBC (or another liver related condition) as it tends to be ongoing regardless.
I got diagnosed in 2010 and the only symptons at the time were tiredness which I excused during that yr during to working on average a 48hr+ wk but the itch just became annoying and moreso more prevalent at night.
You didn't state when you started taking urso as it is supposed to improve the itching BUT for many of us there are limitations and myself, I have 5 days (never more yet) with no itching hardly or none at all and then it returns (usually later evening until around 5p.m. if I am unlucky enough to toss and turn and be awake for lengths of time during the night).
The urso can actually contribute to itching but I can't say in your case as tho' I know a lot about PBC in the last 2yrs I'm not medically qualified to.
I know during 2010 from April I had to put up with the itching until I got the GP's surgery calling me Dec 2010 after waiting 2mths for the results of the AMA. The urso for me has improved things but not stopped the itching altogehter.
One thing that a lot of other people on this forum get prescribed for unbearbale itching is cholestramine (or Questran) and I'm sure other contributors here can add further with that as I only take urso (for now).
Keep us all posted. Know exactly what you are going through from another on/off itcher now.
Started urso in 2004 when I first got the diagnosis. Was on 500mg until 2010, which I thought was too low according to my body weight. After some discussion with pbc with the pbc foundation and a dscussion with my Gp a requet was made to my consultant to reassess the doseage which he initially refused. It took until 2010 and a consultation with the specialist liver nurse to be reassessed. Since then I have been on 1000mg. So I can't blame the URSO for the start of the itching. In fact I think it improved the leg itching that first led me to the doctor prior to pbc diagnosis. The back itching is definately a new symptom.
Just re-read my reply and I meant I tend to start itching anytime after 9p.m. (mostly around 11p.m) if I am going to do so and it lasts until around 5a.m. I get up in the morning (6 if weekday) and it has vanished.
I have mild itch on my back at times. I recall prior to diagnose, I struggled wearing bras and had to change all mine to ones that had no stitching across the inside of the cups as it didn't half irritate.
I have 600mgs of the urso daily and my gastro-enterologist who originally prescribed told the GP to work out at 10mgs per 1kg body weight. He rounded mine to the 6kgs as on checking later (with me still using in the old Imperial measurements) I'm actually on more mgs for my weight (which has stayed the same since taking the urso) but I think it is neither here nor there really.
Reading on certain sites and books about urso, trials have concluded that it doesn't seem to make any difference in majority of patients with PBC if they are on a very high dose or what is recommended for body weight.
I know with PBC apparently we aren't supposed to be able to overdose on it but seems that if a higher dosage is given (ie not using it against body weight) you can get certain side-effects and diarrhoea is one.
Out of interest, I've not had any problems that have prolonged with starting urso except a couple (bloating and heartburn) for a few mths at the start.
I also have the sever itching, urso doesn't help at all, and like you the itching and dryness is worse when I have a shower and whatever cream I use does not remoisturise my skin, The cream the doctor gives me ( double base) i may as well rub on a brick for all the good it is, I buy a lot of good creams but they don't seem to work either, knitting needles and a back scratcher are always to hand :o), Going to try this new garnier stuff next if it's not to exspensive for me.
My skin started to dy out in 2008 after having an operation for cancer ( cancer that I didn't have, it was PBC all the time) and the itching started about 6 to 12 months later.
Omg that's terrible. What a misdiagnosis! Must have been a difficult time for you and your family. Good you didn't have cancer though. Thanks for info. Take care. X
My dry skin has only seemed to be apparent for a month or two, although I seem to remember complaining of some back itching before. I discussed this but put it down to itching "across the jacuzzi line" as at that time I was going swimming a lot and rewarding myelf with a soak in the jacuzzi. Can't blame it on that now as I haven't been to the pool since before Christmas.- reason- too lazy, and too cold
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Hiya lindaclark.
I had eczema as a toddler as my mother used to say.
When I left home at 18, because I was then washing-up and also had a twintub washing machine at the time (still miss one of those but wont' digress!) so my hands were in water a lot. In the colder mths my fingers and the backs of my hands would split and crack and then bleed and take days to heal.
I started using certain washing products to alleviate this and I only tended to buy baby baths when I had a bath.
Funnily enough the last 3 winters I've not had split and cracked hand which I thought odd as I worked as a domestic cleaning for 4hrs a day up until 20mths ago.
The skin on my face used to feel very dry certain times in the yr so I tried various creams and have to say for me the only one I found that was fine was the Astral cream (and since Sainsburys eco-baby lotion).
I think that our skin starts to dry out more with PBC due to scratching the itch as my legs have started to look a lot drier in the last 12mths as in the evening if an itchy night, that is where I tend to feel it most, my legs and feet.
Don't know about everyone else but I have always (and still do) live in a house without central heating so maybe that has some bearing regardless?
I get the itch on my back in the middle between the shoulder blades. I blamed the metal on my bra to start with. The Questran does help and so does the back scratcher.
I did exactly the same, blamed the metal on my bra and also blamed the ticket on it. Back sratcher oh Yay yipee!!!!
X Linda
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I tend to fiddle with the metal fastening on my bra and also the label a lot during the day too!!! I also find I have to cut out labels on clothing these days also as they irritate!
I don't get an itch sensation but a feeling of heat and like miniature electric shocks which happen all over my body. I also get swellings coming up and down. When you guys talk about itch do you mean itch as in something tickling u feeling or a pan feeling?
• in reply to
Nicky407, THANK YOU for your post! I have the same sensation of warmth and vibrations like small electrical shocks, mostly in my torso and feet. I haven't told anybody because it's too hard to describe. This sensation isn't painful, just annoying! Because of your post I now know that it's PBC related. Actually, it's a relief to know and now I'll do my best to ignore it! A big THANK YOU!!
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The only way I can describe the dreaded itch is to me it is like being stung by wasps but slightly milder (if you've ever been unfortunate to be stung by any) or throwing yourself in a bed of nettles! The annoying this about it is you seem to have an itch that you scratch and can't really get rid of and whilst you are taking care of one place, starts off in an other.
My itching is very bad at times depending what I eat...love strawberries...cannot eat them.....I had a bad night a few nights ago....culprit strawberries.....Questren did not work for me...I take nalorex and phenegran and most of the time I have itch free days....We have to be ever so careful as scatching can cause more skin irritation....I purchased a brill rubber backscratcher in Tenerife...always at the side of my bed! Take care all..
This sounds so much like my case. I wasn't diagnosed until 2003, although they know now it was PBC in 1997. Just this Jan I started the itching. I was stage 2 in 2003. My Dr. has me on 1500 mg of ursodiol and cholestryamine for the itch. I think it has helped. I also use a lotion called Sarna, which has camphor and menthol in it sometimes. It is always my back, lower legs and forearms that itch the most. My legs ache alot, but I have Fribromyalgia too. Hope this helps.
Reading this post about fibromyalgia and aches, I not so long ago got up one morn and had that experience of not being able to pick anything up or bend down as my back had what maybe sciatica (had it before in the past and lasted a fortnight). If I tried to bend or even sit down a certain way felt a pain shock and the only way to alleviate was to stand up and keep mobile.
My husband used Deep Heat to rub on the base of my back and that also has menthol (not sure about camphor unless I read the packet again) and I found with that that the sensation of it on my back actually somehow made my senses (?) 'forget' about the itch temporarily.
PS That time recently, I was perfectly fine - touching my toes again if I wanted! - a few days later. No idea what I had had or maybe I had strained myself lifting something.
I was recently diagnosed with PBC after suffering from severe fatigue and then itching. Itching has been a misery even including the palms of my hands which felt like they were on fire. Just before I started the urso the itching mysteriously calmed down dramatically. Had scratched so badly during the night that i had to start wearing cotton gloves to bed as the sheets were covered in blood in by morning due to scratching my legs. I sympathise with you but all i can say is keep moisturing, Holland and Barrett do a good aloe vera gel which i have found very soothing. Take care
I know what you mean mojo I can scratch my tummy to bleeding point through the night, and my ankles well its funny I have any left, I sleep under a 100% cotton sheet, in a cotton vest and panties to keep cool with a 100% cotton blanket at hand for if I get very cold in the night, anything else and I drench the bed in sweat and that makes things worse. Face is okay, well as okay as it can be :o)
Hi Cazzi, i have recently experienced the dreaded itch and i blamed it on all sorts of things. It got to the point where i couldn't sleep hardly at all because everytime my eyes closed the itch would start. I phoned my Liver specialists secretary who in turn spoke to him and within the day there was a precription waiting for collection. It took 3 months to get the treatment to a balance that i could cope with Coleslevelam and Rifampicin as well as Urso and Adcal - D3, i start UV treatment next week. Everybody seems to be different regarding which tablets their bodies can tolerate, i guess patience and trials are the key factors as well as a good consultant. Wishing you well and hope you can soon find relief x
I to have this dreaded itch its a nightmare it seems to me to come in waves,this bout has been going on now for two weeks day and night ,the worst is the palms of both hands and then the inside of my foot,have been taking Loratadine 10mg tablets for nearly 2 years its sheer bliss when i get the in between time my GP gave me E45 cream which I use three times good luck to you wishing you luck
I was diagnosed in 2004 - my itching comes and go's but I have to say my one main mechanism for relief is sunshine - difficult in the U.k but I treat my self to a sun bed every now and then and the itch is relieved for a while - I also take Vitamin A and D supplements. Hope this helps ..............
have sufferd with the itch very badly, and slept with a chese grater for 8months. i have used rifampacin, sertraline, questran, anti histamine, oats for breakfast, acrea cream with2% menthol, uvb treatment, oilatum, (some of these had a negative impact on my lft's) hope you find some ease soon.
I used to only get the itching about one week per year but since Oct last year it was all night every night and drove me insane. Urso made it worse and questran didn't help. Also tried rifampacin which made me feel ill.
I am now on Low Dose Naltrexone which has helped lots. I still get some itching but it is usually around period time. If this happens I put bicarbonate of soda in my bath and have a good soak.
I spent so much money prior to being diagnosed with PBC. I have tried every moisturizer there is, then I started on the baby products for my skin, changed detergents numerous times, changed soaps, tried body washes when I ditched the soaps, bought different kinds of sheets, blankets, comforters, I cut all tags out of my clothes, bought different bras, panties, even went as far as to only buy silky type of clothing etc... Nothing helped. I begin to itch every night around 9 or 10 pm and if I can't get it under control, I am awake until 5, 6 or 7 am. It affects my legs, my back, my belly and my arms. It also affects inside of my ears, sides of my face, palms of my hands, soles of my feet and behind my knees. I try to keep an ice pack available at night and will lay the ice pack on the area and sometimes this will help and I keep a fan blowing on my legs throughout the night to keep them cool. My skin looks awful. I take hydroxzine for itching which makes my drowsy and I think the only reason I finally fall asleep is because I am worn out from trying to scratch every itch. The best thing for me is the ice pack,and the back scratcher. I wish I had all the money I spent on all the above. Lol
As much as I have TRIED to fathom out how to maybe rid myself of the itch, I don't think I can understand this one at all.
I had gone 8 days virtually itch-free until 8 days ago when I was about to start a period and then it came back again and I've just clocked up another 8 nights of feeling itchy and looking like tonight is going to be the same again.....
Like yourself I have done some of the things you have done, cut labels out of clothing, changed material-types in clothing (I got to like linen, maxi-type skirts a few yrs ago but found I just felt itchy in them so charity shop bag they went), even find I have to wash new clothes prior to the first wear or they don't feel right anymore.
I have to say that I've always used what I consider gentle soaps, shampoo etc and thought I was ok so not really much change there altho' have to say I don't put any in bath water anymore (try vinegar these days!).
Like yourself if mine starts it is usually gone 9p.m. but normally going up for 11p.m. I noted and if it is a night where I am not whacked when I retire to bed, I end up in the itch-scratch-itch cycle for long periods of time or fall asleep within relatively short time to wake again 2hrs later, be disappointed it might only be going up for 1a.m. and then spend the next 2/3 hrs tossing and turning and itching until I fall asleep again.
Ironically when I wake up in the morn (around 6a.m. if weekday) I am perfectly fine but then start to dread the evening once 4p.m. comes around.
Likewise, I find my legs and feet are the worse but I also find I itch on my arms, the inside elbow crook normally and the backs of my knees when I'm sat down and you then bend your legs. I find I can't kneel on the floor anymore as itching starts behind my knees and I too get itchy ears at certain times.
I believe because the itch is coming from the inside (my theory is some by-product from bile enroute back thru our bloodstream to the liver which then irritates the tiny nerve endings causing the itch), no amount of creams or whatever will actually do anything.
I feel certain there must be something that we can eat/drink in our daily diet that can maybe neutralise/dilute this 'bile' and the itch diminishes. I've had periods where I haven't itched so there has to be something (tho' I can't fathom out what!) that somehow can alleviate it.
At present, I'd rather NOT turn to anymore prescriptions from the GP, it is just enough as it is for me taking the urso as I've never been partial to prescription or OTC drugs if I can really do without.
I have thought maybe the urso is somehow causing the problem with the itch to remain as judging by the consultant who originally prescribed the urso, he sort of made out that it was a miracle cure for the itch even if not a cure for PBC.
AS I posted the original question I though I would let you know how I'm going on. I visited the hospital today for my 6 monthly check up and said about the itching. As all my blood results are within "normal limits" and my urso dosage is correct for my weight etc. It was suggested that as there wasn't any "cure" for itching in PBC all I could really hope for was to alleviate the symptoms. Initially I am to try - non perfumed soaps, and moisturisers. So my Gp is to be contacted to issue Double Base cream, Oilatum and to try some piriton when necessary. Off to the shops tomorrow to buy simple soap!!!!! If this doesn't help, next time they will re evaluate. Seems to be a question of trial and error and finding something that my work for you, which is what most of you kind people have been saying. Well lets have a go...wish me luck!
Hi, I find also that pure almond oil works for dry skin (and nails). My skin is lovely and soft. I put it all over, feet, legs, arms, body etc my nails especially soak this up. I was recommended this by a lady at my local pharmacy where they also have a vast amount alternative products on sale (needless to say, an independent chemist, and not the big boys). She said that you can forget all the other stuff, as they are full of chemicals (and may contain lanolin, which is made from sheep fat), so if you are sensitive to wool like myself, or just sensitive to products, this might work for you. Let me know if this helps, it would be interesting to know. If we all add what works for us on here, we may come across something that actually does work for everyone so we don't have to take yet more pills!!!!
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