I have PBC and another auto-imune condition. I am having a fairly stressful time at the moment - quite unexpectedly, and outside my control. My main PBC symptom has been fatigue. I have had very slight itching, but nothing worth worrying about. However, the itching is now getting much worse. If it's just the symtom being exacerbated by stress, then I'll cope with it, but my question is: whether stress can cause the effect of PBC on the liver to worsen.
Stress and PBC: I have PBC and another auto... - PBC Foundation
Stress and PBC
Do you know about the PBC Foundation s Compendium, what they suggest regarding self stress management, and about Robert's Positive Mental Attitude workshops? Check them out, get in touch with him/them, it really - REALLLY- is helpful, from all I'v seen from so many people :).
Hello Bonnington.
I started with the itch myself in early 2010 and by Dec that year had the diagnose PBC. I think stress can cause one to feel much worse but I'm not certain that it has anything to do with the itch that can come with PBC (and other liver conditions).
I have found that taking urso from Dec 2010 has helped what I'd say 'a bit' with the itching but it's not helped at all to eradicate it.
For me I find that days when I have been very active and very relaxed I've still had the itch. Over the weekend just gone, I was out and about on the 2 days but last night I had a pretty bad night once I had woken up at 2a.m.
I personally think that the itch is a lot more down to the dietary issue. If I knew exactly the nights when I don't itch what I'd eaten (and drank) throughout the day maybe I'd solve the issue but it's not for the want of trying over the last 2yrs., it's a case of I just do not know as days when I've eaten something I'd not normally do so, I might not itch and then another I do!
I am still wholly convinced that with PBC one of the main things to try and keep in as tip top condition as possible is to attempt to eat healthy even if you did prior to having PBC (as I thought I did as did like it seems majority on this site), crack on with life as much as possible and in my mind, I do cease to think about the PBC., it only comes back to me when I itch at night.
Hope this has helped somewhat.
PS Apparently having the itch is of no indicator as to how one is exactly with PBC. My bloods were recently pretty good, on the decrease again despite the itch!
hello I agree and do think it is what you eat and drink that brings on the itch. I was diagnosed with PBC in 2004 due to feeling tired, it has not bothered me, and I hadn't had to take the medication until May 2012 when the itch started I now take urso 750 mg in the morning and questran powder just before tea. The itch drives you mad of a night time makilng it difficult to cope in the day. I had appointments at the hospital every 3 months and was advised to take the medication at vairious times by different doctors, none helped, they don't seem to know enough about PBC, I was at the end of my tether when I went back in Jan 2013 and asked to see the professor, he sat me down and explained how the medication should be taken, all 3 urso in the morning, questran powder before eating evening meal, the piriton at bedtime, I did what he said I also made a diary of what I ate and drank during the day this resulted in me now not drinking tea, coffer unless it is decaf, any fizzy drinks especially diet coke which I only drank occasionally, no take aways or high fat foods, chocolate of any type, fresh cream, anything hot and spicy as all this contributed to the itch being at its worse, not getting to hot, no more hot baths before bed, no alcohol, not that I was a big drinker anyway. I have recently been able to sleep more at night with the itch being only slight, but you do have to really be disilpined on what you eat and drink. Also I find if I get stressed the itch is bad. Is there anyone out there taking questran had problems with bleeding gums? Hope this is of some help......
Hi there I have suffered with the itch since 2001 and totally agree what you eat and drink does affect it mainly things high in caffeine, fat, sugar or spice and stress/infections make it worse. I do take the Questran one before and one after breakfast which really keeps the itch at bay during the day. I also take one before supper and one during night if itch bad. The bleeding gums could be a sign that your blood is slower to clot you should get this checked out with your dr a simple blood test is all that is required. Take care bfn.
Hello sydney.
Interesting reading about your experiences and how you say you were eventually advised how to take urso in particular.
Is that because you are on 2 other meds as well? I know from what I've read about Questran, you're not supposed to take it within a timeline alongside urso.
I know in my mind I'd not thought to take urso all at once as originally when I was prescribed it was never mentioned about all in one go, was sectioned into the daytime.
I did then read on here about 6wks ago that someone who was also wondering abot when to take urso had been informed they could take it all at once of a morning. I decided to give that a go but have to say all it seemed to do for me later in the morning was bring on the itch that I do not normally suffer in the daytime so after several days I sacked that plan!
In my mind if bile is stored in the gallbladder and urso improves bile flow to me it has always made sense to take it in sectioned doses (I started on 2 tabs per day, one with breakfast, one with evening meal. Have tried halving the tablets and taking 4 a day but that didn't feel right). I do take a milk thistle capsule I open into hot water and drink as a tea at lunchtime as I do think that the addition of one of these is helping the LFTs as experimented with that last yr too!
At the end of the day I think for everyone, it's a case of what suits them as long as they are taking what is deigned an adequate dose for PBC. I somehow do not think there is a hardfast rule of taking the urso as at the end of the day I don't see it as a drug as such but a supplement as after all it is one of the compositions of bile that we manufacture in our systems anyway.
Thanks for all your replies and suggestions. Strangely - the itch hasn't appeared tonight, though I've eaten quite badly today compared with my usual diet, and it's been a stressful day. I'll probably pay the price for it tomorrow.
Hello bonnington.
Snap! Me too! I've just gone through several nights with hardly any itch that has been disruptive as such. I cannot figure it out at all but I have noticed that the itch for me isn't feeling as intense as it used to be when I had it.
I did experiment with milk thistle last yr due to 2 bad LFTs previously (Oct 2011 and Feb 2012) and May 2012 I had a pretty good LFT. I stopped the milk thistle and come Oct 2012 the bloods had started to go wrong way again. Milk thistle back on Dec 2012 and my recent (last mth) LFTs were exceptionally good, in fact better than what was considered the best May 2012.
I'm not sure if the addition of milk thistle is somehow helping with the itch, making it subside a bit as I know at present I feel in pretty good condition. Prior to diagnose my eyes had a slight yellowy tinge to the outer corners which was apparently due to cholesterol not being processed right due to the PBC but over time my eyes have gone back to being pretty white once again.
But I also attribute how I am feeling now regardless due to the fact that we are almost in Spring and then Summer on the way we hope at some point later. I felt this great last yr then took a dive when the dark nights came here in England and the sun wasn't shining much.
I think where the itch is concerned unless we know exactly how to avoid it which I have yet to figure out to then let everyone know (!) it's a case of just getting on with my day and hoping that the night is going to treat me well as it is hit and miss and never known until that magic time comes of around 8p.m. when I normally know if I'm going to cop it or not.