To all those who live in sunny climates all the time do you suffer with the itch caused by PBC?

[littlemo]

I was diagnosed with pbc ten years ago, a year after first had the symptoms and have suffered with the itch all this time to a greater or lesser degree day and night though always seems worse at night. I live in N.Ireland where we rarely see sun however last year I was lucky enough to get away to the sun for a week. During this week not only did I feel well and the most energetic that I have felt in 11yrs but also the itch that plagues me was very minimal and mainly just at night.

[Junolee]

I was diagnosed just recently and the only symptom I've had ( so far) is jaundice. As well as the medication they have also recommended that I get out in the sun whenever possible ...I live near Dublin, so yes easier said than done. It must be a factor for the itch too..I know it is for skin problems too.

[Hidden]

Just spent 10 days in Turkey and cant believe how good i felt. Also no bloating and no itching. just one set back having to come back to the norm x

[Hidden]

I always feel healthier in spain, I think just lying in the sun does wonders for you, I just can't afford it now.

[Hidden]

Hello all.

Well the reason I visited GP in 2010 was because I developed the itch and 8mths later got the diagnose of PBC.

Back in 2010 I was said to have 'Vit D a bit low' but on verifying with the actual reading wasn't bad/alarming apparently AND if you live in the UK, Ireland, Scotland and Wales it is the norm for everyone who doesn't go out of the country during the colder months to be a bit low in Vit D. I was informed to go out and 'utilise the sun' as I'd never been a sun-lover.

I've found though since 2010 my itching makes no difference at all whether I'm in or out of the sun. I have taken to having a lunch in the sun on the days when it 'has got its hat off' but if an evening where I am going to itch, I will still itch regardless of sun exposure.

I do think tho' it is a good thing being in the sun with having PBC but I also find that on the hotter days, even half hr in the sun for me starts making me feel lethargic, the opposite of how I want to feel!!!

Maybe just maybe to feel the difference as some contributors to this question have posed, we need several days/weeks to actually feel the difference with the itch and just an odd day here when sun out isn't quite enough.

I did once read about the sun and the Vit D factor but also I recall it was mentioned that the sun can help get rid of some of the toxins also so maybe that is where the itch subsides.

Wouldn't it be good if everyone did something and then it was found that everyone with PBC reacted exactly the same way but it still seems to me that what can be good for one doesn't exactly aid another and vice-versa.

[Jeri]

I live in South Carolina, always hot always sunny. Very little itch, just random spots, have only had one severe attack. Ocean water seems to help, especially if you have any skin issues, just have to make sure you take a good shower at the end of the day. Stage 2 PBC, diagnosed June 2011.

[zipitydoo]

Wonder what the chances are of us getting holidays in the sun on free prescription?

[shelleyekg in reply to zipitydoo]

Well that would certainly be amazing! If I FELT better I could go back to work, then I could PAY to take a few trips to the sunny south each year.

[Neata]

Would just love free prescriptions the money saved would pay towards a sunny holiday xx

[kosy2]

Found this in The Orphanet Journal of Rare Diseases under Primary Biliary Cirrhosis.

Pruritus, when present, may be a debilitating symptom that significantly impairs quality of life in PBC, just as may fatigue. Usually, pruritus occurs months to years earlier than jaundice, and may improve with progression of liver disease! It is usually less severe in sunny weather and, being worse at night, it may interfere with sleep.

[exy21]

Always feel better and have more energy when on hols in the sun and no itch.

[Hidden]

To add further to yest., I think perhaps people who have responded on here with regards to finding their itching is better when out in the sun maybe due to the fact that it is a holiday overseas? I've never yet been out of the UK and have in the past been told it is a 'different sort of heat'. I can't respond there obviously.

Yes I have also read a couple years ago that pruritis (itching) with PBC can 'resolve itself' as time goes on BUT given people with PBC either itch or don't regardless of how they could be progressing, I think fair to say that that could also be the case even if PBC gets to a worse state over time.

[littlemo]

Thanks to all that responded to my question I definately feel the sun does help my itch most of the time (though one day when was indoors as could not get out in the sun found that the heat, in a place without air conditioning, made it worse). Unfortunately living in cold, mostly wet Ireland I have not had the opportunity to really test out this theory as we tend to just have odd days of sun rather than weeks r even months of it at a time. I'm looking forward to trying out the theory though when I get ( through my dermatologist ) a course of uv light treatment. I just want to get rid of the itch so don't have to have a transplant, the rest of the symptoms of pbc I can live with until either I reach an end stage to the disease or with a bit of luck scientists find some other miracle, less invasive and life-changing cure! I totally agree with some others, be fab if could get sun hols on prescription! Also be brilliant if we could ourselves as people suffering with pbc between us all try same things and mdybe come up with things that help control the symptoms if not a cure!! Now wouldn't that be amazing if just an ordinary bunch of people through sharing info and giving advice and support actually perhaps unintentionally find a cure for pbc or even just something that we all feel lead to us to taking pbc and leave it up to the experts then to say what can cure it.

[Jtxx]

I don't suffer from the itch but I do feel better when I'm abroad on holiday but I think that is because you are taking time out from dealing with every day life and relaxing in the sunny outdoors. NOTHING TO DO AND 2 WEEKS TO DO IT IN. Keep well. X

[sydney]

hello, the itch is a nightmare and can drive you crazy, mine is at night time, no sleep and no energy. I find the sun does help and get away as much as possible. I asked my consultant about UVB light as it does help people with skin problems, he wasn't impresses but referred me to a dermatologist and I have been having light treatment three times a week, its a 10 week course so you have to be committed, I am on week 3 now I have notice I sleep better after I have had a treatment, so lets see how I feel after 10 weeks.

[Hils67]

I agree I always feel a lot better on holiday - usually that's a hot holiday. However, I know I suffer the itch really bad when I'm stressed at work. I don't get stressed on holiday - so not sure whether it's the sunshine or the lack of stress and just generally feeling more relaxed.

I'm happy to use the excuse though for more hot holidays!!

Seriously though, there is a lot of research about the benefits of vitamin D - so going on a sunbed may also help with the itch. If nothing else it gives you a little time to switch off and develop a healthy glow. I use a sunbed about once a month and can't say whether it helps with the itch or not. But I definitely know when I'm stressed I itch - so for me I just concentrate on reducing any stress triggers.