PBC Foundation
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Any suggestions for trouble staying asleep?

Hi everyone. My name is Summer. This is the first time I have posted on here. I was diagnosed a couple of months ago with pbc. One week later I had a liver biopsy and was told it had progressed very fast and that I am in stage 4 already. I have been on urso since the day after the biopsy and my blood work has almost returned to a normal persons levels and I am feeling alot better. I am just having trouble with the fatigue and factor in the not being able to sleep more than 4 hrs at a time, I am stressing. I have a very busy life with a husband and 3 kids that I was wondering is there anything that anyone knows about that might help me stay asleep for a couple more hrs?

5 Replies

Hello breekins.

Well unfortunately I am in the same boat that you are, I can go to bed at night almost midnight, manage to go to sleep due to being up from early that morning (6a.m to 7a.m) and then I wake around 2.15 on the dot almost every early morning. Cannot believe it was only 2hrs since I retired to bed. Some nights I find I am unable to return straight to sleep and fidget with the itch until around 5a.m. when I then nod off and feel tired when I rise but then it leaves me to start feeling like I am flagging at teatime.

I got into a routine if you can call it that of not sleeping too well when my late first husband started being sick in 1989. I wasn't a heavy sleeper anyway after 1986 due to having my daughter and then 1988 my son. I used to think that with this over the years maybe I've somehow grown accustomed to not having much sleep but don't think it does you much good.

In 2010 when I started with the itch, due to full-time work over the allotted hours and over Mon-Sat I did suffer fatigue. I would get in from work around 6p.m., sometimes later and then flop down on the sofa and fall asleep and it was very hard to wake me up. I did quit the job (my husband's idea plus I made a bad job move in 2009), after diagnose Dec 2010 I started to feel more normal and the fatigue has long since left me. I jut get tired due to lack of sleep during the night. I only suffer from he itch now, confined to night.

Due to the fact I am apparently peri-menopausal at present (I am 49) that is supposedly another reason with regards to not sleeping but I've not got any of the symptons that a lot of women mention with regards to their cycle, always been quite lucky there.

I do overheat rather quickly, always have and now is no exception either. I find at night when my feet really warm up they feel even itchier than earlier evening.

I did read a bit about problems with sleeping and apparently if you try to get yourself into a good routine it should help. I quit drinking caffeine products after evening meal, switched to red tea (I only have 2 cups of coffee per day as it is said to be good for the liver) and try to have a couple hours relax from 9p.m. before retiring to bed. Evening time relaxation isn't exactly a bed of roses, start feeling prickly as by 11p.m. I do itch and know it.

I don't go in for staging in PBC myself. I am in UK and was diagnosed with PBC Dec 2010 on the basis that I had abnormal LFTs that had been slowly climbing during that year, had fatigue and itching at the time plus I had the AMA (and ANA) blood test which gave a high titre of the AMA for diagnosis. My scan during 2010 showed pretty much normal organs and liver so I was said to be in an early state of PBC

but I don't bother there as I just don't want to know. My LFTs have slowly come down but they're not normal and in PBC nor are they expected to be normal again but there is a range for persons with PBC and mine are said to be within this range so ok.

Some on this site in the past have mentioned an antihistamine that causes drowsiness to get them to sleep if they itch at night and there may be other medications that a doctor can prescribe for helping but I personally do not want to go down that route (yet). I just take urso but at the moment I am on a 12wks course of iron for mild anaemia (was informed I had this last wk) and being anaemic is also the cause of insomnia so maybe I might improve once I am back to normal soon.


I wake up regularly just like peridot., I go to bed about 11 and fidget till I nod off then wake up at 2.30, 4.30 to 5.30. 7.30 to 8 and then I conk out till 10 am most mornings and then want to get back in bed at 3 to 4 pm for a nap till about 6.

I never drink tea or coffee anymore just water, lucozade or pepsi.


Hiya Linda. Ditto and ditto and ditto! Last night after a couple of bad nights, I managed to do pretty well. Seemed to do my itching prior to going to bed at 12.15a.m!

I woke an hour after going to bed last night but then I turned over and went to sleep. I next woke at not far off 5a.m. I did wake up just before the alarm clock went off at 5.45a.m. then as my husband has to rise for work at that time. Been up since 6.30a.m. so hopefully tonight I shall be tired.

I often feel like going to sleep later in the day but unfortunately I feel I mustn't as I just know if I did I'd not sleep at all during the night. I don't feel fatigued with PBC like I did up until 2011, just tiredness following a bad night's sleep so for me I think I am a bit fortunate there, bad enough itching.

Just a thought, I don't drink 'fizzy pops', never have been that partial myself. Think it is the fizz that does it. Wondering if a drink like Pepsi is ok as there is caffeine in the cola drinks (think there is a caffeine free one by the rival company). I have never liked the look of the ingredients in colas so I avoid. Have you ever tried Whole Earth's canned fizzy drinks at all? Holland & Barratt do sell. There is natural cola, elderberry and a cranberry one. (Like the first 2.) Fentimanns also do bottled natural fizzy drinks, they do Curiosity Cola, a ginger beer and an old-fashioned lemonade plus an orange and a couple others. I've tried them all over the last decade and prefer due to them being without chemical additives.


Hi Breekins,

So sorry you are having to deal with this. But so good that you bloods have responded so quickly.

I've always found it hard to sleep and it has become much worse with the peri/menopause. Read all you can on the best advice for good sleep, as there's a lot out there and it will be more accurate than I/we can summarise. However, I'd suggest: try to have a routine, and stick to it; don't go to bed too late; make sure you are comfy in every way, eg not too hot, not too cold, pillows just right, no noise or distracting lights. Also, no TVs/phones/tablets or other light emitting devices in the bedroom, or anything else at all that could be scary/distracting/awakening: don't even read books that will wake you, or watch high stress movies/dramas before bed. Also, avoid big meals too near to bedtime, but don't try to sleep if hungry. Also, steer clear of all caffeine drinks (and food) well before bedtime. I only have coffee before midday (and then only 1 or 2 small ones), and I don't touch fizzy anything drinks. I agree with Peridot about this. They often have caffeine in, plus ... the fizzy 'gas' can make you pee more than necessary, which means you can become slightly dehydrated, so you can wake up 'cos you are thirsty. I even stop drinking ordinary tea by mid afternoon. Try herbal teas: or Red tea if you want a 'tea' substitute, as it doesn't have caffeine. Camomile or 'sleepy teas' are good just before bed.

I don't have PBC proper, just test +ve for amas, but my GPs are excellent, and keep an eye on everything. My lifetime sleeplessness got much worse with the onset of menopausal hot flushes, and my woman GP suggested minute doses of amitriptyline. It was originally designed/prescribed as an antidepressant, but in much, much larger doses. Now it's rarely used for that, but I'm told it's used for fibromyalgia, migraines, and for cases of insomnia. I've found it helpful, but it's not for everybody. However you might want to check it out with your GP - along with other possibilities.

Look after yourself and I hope things improve.


My Dr explained to me that I don't sleep well because I am sooooo tired all day! He gave me nuvigil for my day time fatigue which is wonderful and then I am able to sleep a little bit better. It also helps with weight loss. I know I have posted about it it a million times already but it is really helping me in so many ways!


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