Where the itch occur with PBC WHEN u have it I have itch in my private area is that a sign of PBC

[Alousha]

[Hidden]

Hello Alousha.

Have you been diagnosed with PBC then and how?

Itching seems to feel the same for us all with PBC (I am a night time itcher - that is why I went to the GP back in 2010) but it can vary where on the body we tend to get it.

I start feeling prickly around 9p.m. and then it's usually full-blown and irritating around 11p.m. If I manage to sleep straight-away I don't do so bad but I can't say I sleep right through the night from going to bed around midnight up until getting up around 6a.m.

Now I never used to feel the itch in the intimate (private) areas at the beginning but Istarted to feel prickly there at night now about a year ago. I think it is due to taking urso as it figures it will change the compostition of urine and also the faeces. I'm perfectly ok during the day, no problem but some nights I feel it in those areas, others I don't.

I find my toes tend to be the biggest irritation for me later at night especially when my feet get hot. I've always been one to feel any direct heat so can feel hot quickly and with this PBC it now can be a disadvantage I feel.

If you haven't got any other problem with that area then it is probably due to PBC as the itch seems to come anywhere on the body.

But if you are in any doubt I'd seek the advice of a medic.

[Alousha]

I just got diagnose with and just start the ursodol like two days ago but I have the itch in my scalp and the above mentioned area. I am very new to the disease. I am like a baby in it but the itch start like 6 month ago and I read some people all over there body for me it was either in my scalp or private area. U mean it will get worse with utsodole I am still in stage one and I am only 36.

[Anne123_45 in reply to Alousha]

The itch your referring to may be fro psoriasis.. It's autoimmune too . Have you any dry patchy skin there? Check it out with your doctor .

[skywalker]

Have yourself checked for diabetes I know that itching in privates may suggest this! Good luck x

[exy21]

I have the itch all over but my itch down there was diagnosed as dermatitis as the skin is dry and cracks, very painful. Prescribed creams specially for there. Do to docs to make sure.

[Hidden]

My 3yr old grand-daughter was diagnosed insulin-dependent diabetic Dec last yr just before her 3rd birthday and she had been having bouts of recurrent problems in the intimate area and has had thrush several times as apparently you are prone to it with diabetes.

I know I'm not diabetic nor do I have psoriasis. I just find it odd that for me it is like the itch, a bit hit and miss as some nights I don't feel the itch in certain areas but it always starts around the time the itch is about to start erupting.

I do think it is due to taking urso, that change in composition of urine and/or faeces plus of course itching can be on any part of the skin really and it seems where there are nerve endings.

[Gioielli]

I have the itch in the private area for years long before I was diagnosed and put on URSO. Doctor said it was not piles but consultant said it was unlikely to be PBC related. I am not diabetic or suffer from psoriasis but continue to itch there, also scalp but no other area to any extent yet! I believe it is something to do with the PBC so just suffer it and use cream to ease it. As this disease is so rare and so little is known about it then continue to wait until more research is done. Hoping we do get some answers soon - take care one and all! x

[Hidden in reply to Gioielli]

Sorry to read Gioielli that you get the itch on your scalp as well as that personal area. I have noticed of late I've not been too badly with the itch but at night I do get it in the intimate area on an hit and miss basis but I always seem to have the itch on my legs below the knees and also my toes.

I dare not speak too soon as today I've not actually itched at all as in felt the odd prickle and it has gone 9p.m., a time when I usually have plenty of prickles ready for it to really erupt by 11p.m. But that could be possibly due to the fact I've been so busy and rather upset this w/e due to my sister being in hospital with a sudden brain haemorrhage.

[littlemo in reply to Hidden]

Hi Peridot so sorry to hear about your sister.Very stressful time for you. How is she doing now? Take care. Bfn. x

[Gioielli]

So sorry to hear about your sister. I do hope she is recovering. A very stressful time for you. My itch is not too bad - like you say mainly a prickle! Only real itchiness is my intimate area but is controllable with cream!! Take care of yourself and hope your sister recovers soon. xx

[Hidden in reply to Gioielli]

Hello Gioielli.

Thanks for your kind words. We are still waiting on my sister waking up. She had to have further surgery yesterday, found out she had an aneurysm. It's been a surreal few days. I was only talking over the phone to her 6 hours prior to her haemorrhaging.

So we are all up and down and sorting this and that out.

I think I can't believe this has occurred. I am at the moment thinking the PBC is so trivial by comparison. I've found the itch hasn't been as bad but whether that is due to my mind on other things or the fact by being up and down during the day, sleep seems to be that much easier at night due to me feeling really tired by then.

[Gioielli]

Dear Peridot,

So hope that your sister makes a full recovery. You are certainly right in saying that our problems with PBC seem trivial by comparison. Take care of yourself at this difficult time. xx

[Hidden in reply to Gioielli]

Hello Gioielli. My family are still waiting as my sister has still yet to wake up. Keep wondering when it is going to happen so we can really see how she is. So a dreadful time. I go for repeat bloods next Monday and expect them got that to possible think about. But at the moment I am ok and know I could be in a worst state. Don't think the dreadful English weather helps anyone at the moment. After a bad frosty day yesterday, got up this morning to rain and then it had cleared later morning and we got a bit of sunshine but then mid-afternoon it had got so cold and windy out that it was biting before tea when I was enroute home. Now it is raining.....

[Gioielli in reply to Hidden]

Hi Peridot, Do hope your sister wakes up soon and she is ok. I realize what a terrible time it is for you, so hopefully your health doesn't suffer too much because of all the stress. The weather is pretty awful and doesn't help but try and remain positive and don't worry too much. Take care of yourself. xx

[Hidden in reply to Hidden]

Sorry to read about your sister, I hope she pulls through okay.

I don't think this horrible cold weather and central heating help the itch but I get so cold i have to put it on and then I start burning up with the heat, poor OH doesn't know if he is coming or going. one minuet the heating is on and the next its off and the door flung open with me scratching and rubbing b my back against the door frame.

[Hidden in reply to Hidden]

Thanks linda and Gioielli. My sister has still not woken up from surgery Monday. We are all waiting. I feel more for my brother-in-law, know what he is going through as my first husband got sick all those years ago. It still seems so unreal. We all want her to wake up so we can take it from there.

Last night I didn't actually itch!! I find this very unreal, for the last 2 nights I have managed a total of 8hrs sleep, only briefly waking once and then going back to sleep. Now this does seem odd. Is there some break through here with the PBC at last, after 3yrs on urso?

I too find I cannot stand the heat. My husband has been working far too long in his job this year and with his stepmother being very demanding (his dad died last year) she keeps ringing the house phone and this week in particular I jump wondering if it is my brother-in-law. We have been to the hospital that isn't local to see my sister and it has all started to take its toll. Not to mention in the last 3yrs I've been a night time fidget with the itch (I used to come downstairs and go back to bed around 4a.m. but not lately). He was tired last night, falling asleep so went to bed at 9p.m. I can't do this, have to go around midnight these days or do not sleep for long.

My home is pretty cold this time of year, no central heating but it's actually not too bad for one with PBC! I normally get undressed around 9p.m. as I feel ore comfortable and last night I took the gas fire off. I didn't actually feel that cold but my skin was to touch. I didn't actually have time to warm up when I went to bed as I dropped off to sleep as normally when I get too warm, it is my toes and legs at night that start itching badly.

I've always felt any direct heat, my face goes red. I think now though part of it is the hormones due to me apparently being peri-menopause. As yet I've not actually suffered what are known as hot flushes. I've just had 2 that I did know of in the last 12mths so I think I am doing pretty well at the mo., no problems. Anyone know if the flushes grow in intensity as you progress further towards menopause?