I'm newly diagnosed with PBC

[bartholomewpatri]

I have not yet had the liver biopsy but I have so many questions. Such as is it okay to shampoo and shower with regular soaps if not what should I cleanse with? I do not have much itching I did itch for a time but my 61st have me the powder choletrne and the itching stopped after two used.thanks for any tips you can give me on diet in the early stages

[June9961]

Hiya, try to carry on just as normal. If you itch use a low perfumed soap and a gentler shampoo. I have had PBC for over 16 years and just adjust as I go along. As for diet....trial and error. Personally I just watch the fats in foods but still have the odd blowout of fish and chips and Indian. Contact the PBC Foundation as they have a very useful booklet giving guidelines.😀

[bartholomewpatri in reply to June9961]

Thank you kindly

[janetfolley]

Carry on as normal no need to change anything, I've had Pbc for 14yrs but always on low fat diet as liver does not break down fats. Only one advice use soap. Tomorrow i am having a full knee replacement so fingers cross in surgery.

[Shine1 in reply to janetfolley]

Good luck with the surgery, hope it goes well

[Hidden in reply to janetfolley]

Hello janetfolley.

It is actually the bile that breaks down fats in the system. The liver is responsible for processing bile.

Like yourself though I try to keep to a low fat diet as with now having PBC and the fact that we are taking a component of bile for better digestion thus thought to cause less strain on the liver, think it could be better.

Hope your surgery goes well and you make a speedy recovery.

I've been diagnosed with PBC 6 years come December and I do like to find out that there are others on this site who have been with PBC for considerably longer. It does come across as giving out hope for the future for one with it.

[June9961 in reply to janetfolley]

Good luck with the knee replacement and speedy recovery. X

[bartholomewpatri in reply to janetfolley]

Best wishes with the surgery

[Shine1]

Hello,

I haven't heard any particular rules around what products to use, but the liver processes chemicals, so if it's skin products high in chemicals etc then maybe that won't help. I have dry, sensitive skin and am often itchy, so I use natural products for face and body, that have things like essential oils in without too many unknown chemical names in them! Though go with what you're comfortable with.

Am still working out what's best on the diet front. Am having a flare and think maybe partly from difficulty processing fatty and raw foods, including the good fats like from eating a lot of nuts. But I think most people would say try and eat healthily as you can.

Take care, rest and carry on with things you enjoy. This forum and PBC Foundation are really helpful x

[Hidden in reply to Shine1]

Hello Shine1.

I'd not have believed it myself but I started to take note of certain foods being PBC diagnosed for over 5yrs now.

I am an itcher with PBC and I have somehow noticed that what I have thought for some time now could be right. I have been finding that eating salads due to us Brits supposedly being in the throes of summer (might have the temperature here in Lancs but we haven't got much sunshine, more rain!) I have noted how later that night I have felt itchier than usual. I did think about raw foods we eat some time ago but the more I think now I am somehow convinced that fresh foods that are cooked may be easier for digestion now.

It has been a well known fact for over a century (maybe more) that certain foods are good for the convalescent or invalid as it used to be termed and if these were considered easier to digest then there might be some useful facts in there for one with PBC.

I like eating muesli (have to say I go for a bag that has no sulphites in or preservatives that are found in certain dried fruits) and also peanuts, cashews (they are supposed to have some nutrient in them (can't recall what at the moment) that is said to be good), etc. and will continue to consume.

As I see it as medics often say re medications, 'the benefits outweigh the risks' and to me nutrients in certain foods are beneficial even if I sometimes find that they cause me to itch that bit more of a night.

[Shine1 in reply to Hidden]

Hi Peridot,

Thanks for that. Yes whilst it's difficult stmptom-wise it is quite fascinating, the body's response to things consumed and used, especially with an autoimmune condition like PBC.

I'm an itcher too. At the moment it's liver and stomach discomfort and aching after I eat too much of certain things. I find if I eat a lot of something repeatedly (love all types of nuts and fruit and nut bars etc) then this kicks in. I do agree we need those nutrients, especially the good fats for fat soluble vitamins, omega oils and to help our skin and body generally. Seems to be a working out bit by bit what works individually. I agree about cooked rather than raw for the most part too. Some people a lot of salads and raw really helps, but personally have found cooking food say by steaming is digested much better.

PS loved what you said about the British weather, too true!

[DeeSree in reply to Hidden]

Peridot, I agree with you. Some years ago I was on a diet and the doctor told me It was better to eat a whole egg an not egg beaters or that pre mixed egg substitute that many people were going to to keep down the cholesterol. Then he went on to say, the whole egg is much easier on the liver because it a natural food, everything is filtered through the liver so anything that is processed is not beneficial to the liver because it makes it work harder to do its job. So even fresh raw foods do take more processing in the body. A raw apple can create an esophageal spasm for me, while I love them have learned my lesson. Slightly cooked to be full of nutrients and a bit softer is so much easier on my body and liver... I agree Thanks

[Hidden]

Hello bartholomewpatri.

The itch in PBC is said to come from inside and reckoned to be used bile that isn't fully processed via the biliary system so it eeks out via the skin. My theory is that this used bile then reacts with all the tiny nerve endings (a sort of electric shock!) and that is why we feel itchy. I've been an itcher since early 2010 and was diagnosed with PBC December 2010. The itch has altered since taking urso but has taken some time.

I have tried various potions in the bath and some I have to say seem pretty good. They can't eradicate the itch as we need to eat which then causes the itching. I used to buy Epsom Salts (in the UK Holland & Barratt sell a large drum by a London Company (you can actually buy direct from this company online)) and put that in the bath. I've used Dead Sea Salts for bathing and also bicarb. (Found the bicarb a bit skin drying.) I've even bought sea salt for bathing. These are fine for any tiny cuts you might have on your skin, aids the healing process better.

I have recent used honey melted in boiling water with vinegar that I add to the bath. This does seem to make the skin feel soft following bathing. I find bathing early morning far better than the evening.

I continue to buy soaps that I consider better for the skin and environment, same with shampoo that I always have. I don't tend to bathe with bubble baths much, never did pre-PBC.

I have used porridge oats put in an old tight/sticking hung over the bath whilst it has been filling and that does actually give your skin a silk like texture after bathing. I also have added some camomile teabags to the water a time or two.

I know after I started itching I found going to the local swimming baths a nightmare for my skin. I itched more that was probably due to all that chlorine they use in the pool and my skin looked and felt extremely dry following a swim. So I don't bother. I've never been that fond of swimming though I can swim well so I continue to do short and longer walks and keep active as I find being active even with this PBC (when at times I feel tired due to broken sleep during the night due to the itch) it does seem to alleviate the itch somewhat.

[DeeSree]

I just keep a metal telescoping back scratching hand by my bed and in my purse all the time just in case. The Urso has helped with the itching. The first sign of liver issues is an itchy back. By the way and the first sign of Alzheimer's is losing the sense of smell... Interesting facts. Husband had Alzheimers and lost his sense of smell in late 40s, Dad too lost his in his early 50's My back itched for years before learning I had PBC and my moms back itched for a long time before they found her cancer that had gone to her liver... Interesting... Good to know info...

[birdie2013]

hello.. I was diagnosed early 2023 with PBC.. high Alk Phos, severe fatigue and horrific back pain. I also had liver pain and lower leg edema. started on URSO 900 mg and eating VERY low carb. I weighed 178 at time of dx.. lost 21 lbs by December and my numbers are now within a normal range. My Dr said we caught it early.. thankfully. I have felt SO much less fatigue when I changed my diet to low carb. I am also lost menopausal and started on pellet therapy so that may have helped in some regards? I do find that I require more “naps” here and there, but overall the diet change and more activity (walking mostly) has helped tremendously. I only had minimal itching, but as my numbers have gone down, this is no longer an issue it seems. I was terrified when diagnosed bc I’m a nurse and had never heard of PBC before then. My dr said if my numbers would start to increase that I could add another med, but I’m hoping to avoid that. This is a great forum for support and information. In terms of soaps, I just use normal body wash from the store and have not had any increase in itching. I like Aveeno products mostly. Wishing you all the best..