Don't know if I'm starting with the itches ... - PBC Foundation
Don't know if I'm starting with the itches of pbc only seem to have them at night on my arms legs face neck and chest give me answers
Hi Karen....intrestingly I was thinking about that the other night and was going to ask same question.....i was diagnosed March 2011 and noticed many with PBC talking about the itching and at the time i had a horrid itch in ear and never thought much more about thinking I was one of the 'lucky' ones and never delved into it more with relation to the 'itch' but lately and yes at night time I have noticed abnormal itches......all of yr above places, on my face it feels like there is a hair tickling etc
Going to start making a record........let me know how yr night goes
Hello Karen.
Well I am one of the unfortunates who does itch! That is what originally prompted me to see a GP in the first part of 2010.
The itching is rather random actually but tends to be more prevalent on my lower arms, back of my knees and my feet and toes.
To me it has always felt like I am rolling in nettles or even being hit by wasps. No sooner do I reach out to itch a spot that just starts out of nowhere then it starts in another. Apparently it is something to do with bile salts acting on the tiny nerve ends.
After starting on urso 8mths after I originally started with the itch and being informed I had PBC I have found that the itch has settled somewhat. I did used to feel it at times during the day in the beginning but for over a year now I only tend to be plagued with it later evening (until around 5a.m - can't help noticing if one wakes up during the night and then struggles to return to sleep due to itching). i do go through periods where I don't itch for days on end and then back it comes again.
The odd thing is I find that I can itch on a certain part of my body more one night (ie my calves to my ankles) and then another it's not a 'problem' there. I did a year ago note it down when I did and didn't itch but then gave up as know that it's not going to go away and I don't want to get hung up about it.
As daft as it sounds, I have found that during the day if active and busy with not sitting down for long periods of time (I know, difficult if one with PBC suffers badly from fatigue which I have to add I've not done so for over a year now), it can be found the itch is pretty non-existent then. Of course when you are trying to have a sit down, maybe read or watch tv before retiring to bed, that is when you start to notice the itch coming on. For me I start with minor prickles which then builds up.
As yet I've not opted to ask for any further meds for it, just don't deem it necessary at present as for me I think currently the urso is fine.
I think with PBC it lookis like judging from others, that itching comes in varying forms, some suffer badly, others itch but not overly-bad and some don't itch at all. It is quite bizarre really as for me if I didn't have the itch I'd not even think about the PBC I'm certain.
I get the itch on and off. It affects my legs, hands, feet and face/ eyes mostly. When it comes on, it's horrendous. I have marks on my legs still from an itch attack a fews weeks ago. Looking back, I have had periodic itching for many years. I always put it down to washing powder/ soap and that kind of thing. I think I know better now!
The only thing that I use for the itching is a steroid cream occasionally or a lot of moisturiser. It doesn't stop the itch but it helps keep my skin intact.
I am having a bad itchy attack now, my skin has dried out, I thought it was something to do with the cental heating going on, I just got out of the shower and my skin is alive at the moment and it's not nice having to keep splattering yourself with cream either in this cold weather, most of my itch at the moment is my body , front, side and back and it's driving me that bonkers, I can't think straight, I am just waiting for my thighs to join in.
I have tried bicorbonate of soda in the bath water and this helps with the itch a lot. I was diagnosed some five months ago and started on Urso and whilst this has eradicate the itch to a certain extent - if I start itching in the evening I bath with bircabonate to ensure a better night sleep.
My itching has become so bad that I went to a dermatologist. Told me I was the third PBC he had ever seen. I break out with little bumps, look and feel like fire ant bites. They biopsied one of the areas to see if they could figure anything out, that should be back today or tomorrow. Have prescription creme and eardrops and double dose Benedryl. Helps a bit.
Hi Karenlesley,i was diagnoised in may off this year and i have started with the itch,usually on my arms and legs.Its awful i get to the point were i bleed becausei have to scratch it that much,i find splashing myself with cold water helps.Im going to mention it again when i go back to see th specalist as its driving me crazy.xx
Hi Donna I was diagnosed in may after having fatigue for 3 years and being told by doctors it was depression. Do you have a lot of joint and muscle pain too
Hi Karen I've had the itch from pbc for 11yrs. At the start was mostly my feet,lower legs, hands and arms. However you can get theitch anywhere on your body including the private bits which is horrendous not to mention embarassing! I'm hoping to finally write a blogg with many of my experiences over the years but re the itch best advice I can give you is drink plenty of water (1-2 litres/day), eat small and often (every2-3hrs), eat healthy( get your 5 a day fruit and veg), keep active and reduce or avoid stress (if possible) and just try not to scratch as it really doesn't help and take medicine prescribed for it (questran light is one i take which helps to reduce it to a tolerable level. Good luck hope it is only a minor irritation to you I have had it to varying degrees over the years. Take care of you and yours
My itching was really bad when i was diagnosed with PBC in oct 2011. It was my arms, back and scalp. Since starting the URSO its calmed it down quite a lot but is worse in the summer when its hot. I was prescriped diprobase cream which is brilliant as it stops the itching which only tends to be on my arms now and again.
Hi Karen, I was diagnosed in Nov 2010, after suffering with severe fatigue. Never had "the itch", except severe in my ears for years, and have had lots of ear drops, etc, but nothing has worked. In the last month, I've been waking up in the night scratching. Seems to be my back and ribs are especially itchy, but mostly at night. I'm starting to suspect PBC. There is nothing to see on the skin (except redness where i've been scratching). I'm just hoping it's not going to get any worse!
I was just diagnosed this Oct- 2012. Still adjusting... I did not realize how much itching I was having. Silly me!
My breasts have been itching for 2 years. Doctors have been looking for cancer as the cause. I even went to a surgeon, but there was nothing to biopsy. I just itched. I thought I had become allergic to shampoos because my scalp was itching on and off. Over the last year I also thought I had a chronic case of athlete's foot, but it never looked like it. I also started having chronic yeast infections (itching). I rub my hands a lot, I get tingles.
I never put it all together that I have an itching problem. Also, I had chronic itching during both of my pregnancy (16 and 14 years ago). After I delivered the itching slowly went away. I wonder if that was when my PBC started. I'm 42 now. Stage 2
