I have had PBC for about 10 years but just recently the itching has become unbearable, it is so good to read the posts on here and know I am not alone!
Has anyone found drinking more plain water and eating foods that are good for dry skin such as oily fish, avocados, sweet potatoes and cucumber helps at all? I have been trying this for a few days now but know it takes up to 6 weeks for the skin to improve. - does dry skin really exacerbate the itching? Have tried all sorts of creams and lotions and can't find anything that eases the symptoms.
PLus the heating is now on and I am alone in wanting the house positively cool!! Have pots of water on the radiators to try and humidify the rooms!
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JTay
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I started itching early 2010 when I was 46. December 2010 I was diagnosed with PBC. The itch though not 24 hours a day and as intense since starting urso has altered in severity and I tend to start feeling prickly early evening and and by 11p.m. I do have the itch that causes broken sleep during the night. By 6a.m. it tends to have vanished. This along with the bloods that are still above normal (though said to be OK) appears to be the only sympton I have (or that I know of).
I have tried various experiments myself in the last 6yrs with diet (I reckon I had a pretty good diet pre-early 2010, never been a smoker and only drank special occasions). I have even tried taking urso at differing times and found that for me taking all at once (there doesn't appear to be any set rules on when to take it once established on it), it caused me to itch intensely within a few hours. I prefer taking mine with breakfast and then around 3p.m. now, works better for me.
I have found that no creams or potions get rid of the itch purely because it comes from the inside and said to be used bile salts leeching out of the skin. My opinion is that because it can be any place on the body, more than likely due to the used bile being in the bloodstream and then I think it reacts with the tiny nerve endings causing us to have the sensations of the itch.
I do find when I am cool (I live in a hosue that has no central heating, in fact never lived in a house with it yet), it feels better. But still for me it is cyclical, starts early evening almost every day. Some days notso bad, others can be worse.
I haven't found much in the way of dietary that can ease it. I think it is due to the fact we need to eat and this is when bile is needed. I think having a diet lower in fat helps though as less bile would be needed as bile is needed to break up fats.
I also found that keeping the house cool helped a lot with the itching. I also was found to have Vitamin A, D, and K deficiencies...and taking high supplements to correct that made a huge difference. That said, heat still makes me itch a little be but not to the intensity it did before where I was nearly in tears. Usually I can just put a cool wash cloth on it or even a fan and it subsides easily.
I certainly have no problem with a cool house, I live in an old stone terraced end house (6 outside walls!) and there is no central heating. As you can imagine it isn't very warm in the colder north west of the UK this time of year.
I've never been one for artificial heating anyway. I always find after a short while I start burning up and my face definitely starts to gain a red colour due to the heat.
I recently bought a couple of items from AVON the beauty product 'people' and one is a foot soak that is just lovely, the other is a cooling foot and leg gel that has menthol and eucalyptus in it. You can certainly feel the coolness when you use but it only works for a couple hours and that is that. Nothing seems to work from the outside I have found.
The only thing I can say is that some days when the itch isn't at all of a great prevalence at night I reckon it is somehow due to a balance of bile and whatever I've consumed. That is a tricky one though to repeat every day I think.
I also have been diagnosed with PBC about 10 years ago. In 2014 my itch (more like a burning sensation) became so intense that I sought help from my GP. Unfortunately nearly three years on I still have the itch. I was given an assortment of anti histamines but with a change of surgeries I asked for colestyramine (Questran) which has reduced the severity of the itch but not rid me of it. I saw a specialist who recommended a menthol cream which I immediately ordered from the chemist which is 2%. It gives me temporary relief enough to get me off to sleep. The GP prescribed a cream (following the specialists letter to them) at less than 1% which frankly is useless. I have just added Naltroxone to the list but after three doses of 25mg I cannot say my skin is any different.
I eat the foods you list and have done for quite some considerable time so not really sure it makes that much difference to PBC. I do not know if dry skin really exacerbates the itching but I think it is easier to tear through the skin causing sores when the skin is dry rather than when it is supple.
In an article in the Bear Facts magazine Spring 2015 there is an article by Professor Neuburger so I am quoting from his article.
"It used to be thought that the bile acids that are retained in PBC were the cause of the itching but subsequent studies have suggested that this might not be the cause." It goes on to say "have suggested that the itch may be related to the retention of naturally occuring chemicals called opioids........" If you have not seen the article and want to read it you can see back copies of the Bear Facts magazine in the member's section on the PBC Foundation web site.
JTajJ. I am sure the person who can find a remedy for itching (or the liver, because that is where it comes from) will be able to be a millionaire over and over
I was first diagnosed around 2012 and itching was one of my first symptoms. It lasted a couple years, and was first thought to possibly be lupus or rosacea. But it also was discovered I had a severe (near 0) Vitamin D and A deficiency. When I started taking 10,000 UI a day of a sublingual Vitamin D, after just a few days the itching subsided. I still had episodes occasionally...but since starting a Whole Foods, plant-based, no animal products and very low sugar, gluten and oils it's completely gone. Been doing this since January 2016 and not only did itching subside, so did my severe fatigue, muscle pain, and even my Duputen's contracture in my hands got much better. the bumps are very reduced. My cholesterol has lowered over 80 points to 206. My ANA went from 320 to 6 which is normal.and the cholesterol deposits that was growing on my eye went away. My doctor says the disease itself may not go away but the progress has significantly slowed and my quality of life is light years better.
If you want to learn more about how diet can help, I highly recommend the following evidence based resources on nutrition:
- the documentary and book "Forks over Knives" based on "The China Study" a book on nutrition research
- Plant Pure Nation - documentary, website, and a cookbook with lots of easy recipes
- Dr. Greger's site NutritionFacts.org and book "How not to die."
I don't follow any of the plans perfectly, but do a customized approach based on how my own body reacts and focusing on the foods that make sense for me and that I really like.
I also have referenced the nutritional guideline set forth by Dr. McDougall, Dr. Esselstyn and nutritionist, Julianne Hever.
Hope this helps get you started on finding natural relief!
What I love most about all of these resources is that none of them is trying to sell you supplements or making claims of magical healing...they believe in the power of whole plant-based foods, without demonizing or glorifying specific plants as being good or bad for everyone. They fully respect the complexity of nutrition and how each person needs to customize based on their own food sensitivities and health conditions.
Hi Abenefit I started with my liver enzymes elevated & I tested positive for autoimmune. I had a liver biopsy and I was told they are not 100% positive that I have PBC. I am going to a specialist on the 22nd. I am very scared I have read a lot about taking the Urso and the life expectancy. Do you have any advice. I see you are doing well.
I am doing better...and my symptoms are still a roller coaster....but that's because nutrition is just one part of complex nature of this disease. There is no "cure" as far as I can tell...but there are people who live very long better quality lives with multi-faceted lifestyle, nutrition and medical treatment. I Just started taking Urso myself this month...I've been feeling more fatigue, itching and leg swelling, etc...but I'm also extremely stressed by what's going on with our presidential election, a recent infection and root canal, and other family events...also it's fall and there is much less sun and heavy allergens in the air...so it's likely the way I'm feeling is NOT because of the Urso. Stress is a major contributor to the symptoms. So I'm going to keep going with the Urso for now..I'm gradually building up though..from 2x to 3 x and eventually to 4x a day. p.s. My liver biopsy was clearly stage 3 PBC and I just found a liver doctor near me that is getting me a Fibroscan! We just got one of the first in the U.S here in NJ this past summer. Because PBC is rare here and we have profit driven healthcare and there is very little profit to be made from PBC patients - we in the U.S. are the last to get the innovations in PBC treatments that Europeans, Canadians and British have.
But I digress...re: nutrition...my advice is to try eating primarily organic whole-food plant based using the nutrition guidelines. We did it gradually over 3-4 months...just trying new foods and gradually replacing meat-based meals with things like hearty 4-bean veggie soups, eggplant rollups with tofu or Kite Hill cashew ricotta instead of dairy cheese. As we found favorite dishes, it got easier and easier. I love soy milk now and use it to make chowders etc. We also like buddha bowls (you can google that and get tons of resources...so easy to make 1 dish highly nutritious meals!)
My husband eats the same way as me even though he did not have any diagnosis and his cholesterol went down to 150. He has more energy than I've ever seen him have in the 15 years we've been together. His allergies and headaches are gone...he focuses better at work. It is amazing how eating nutrient-dense food and not eating animal products can enable the body to heal itself. p.s. we both also lost weight...that was never our goal and we don't count calories...but I lost 30 and he lost 10 pounds. The most important thing is we never feel deprived or restricted...we feel so good and eat delicious food. Learning about veganism and how animals are treated has made it so easy for us to not miss eating them. We are animal lovers so that part of the transition was fairly easy...the hardest part for me was learning to cook...but once I made the new meals several times it got easier. Almost a year in and we now have very well established new habits and it feels easier than ever to eat this way.
Thank you for all the great advice I will definitely try the plant base food. I am still going through trying to find out exactly where I am at with this disease it's very scary for me right now.
bbamers - I understand. When I first heard that I might have to stop eating eggs, butter, cheese, fish and meat etc...I was soooo depressed. I went through a grieving period before finally being able to see past my initial anger and hopelessness. I began to feel grateful that instead of having to figure out how to pay for expensive medicines, supplements and surgeries etc I began to feel so grateful that I could make such a huge difference in my quality of life just by changing the kinds of food I buy and eat. And actually organic whole foods and beans etc. are so much cheaper than organic meat that we ended up saving money!
When you think about it, it's freeing to not feel dependent on access to doctors and drugs. It's empowering to feel like you can make such a big difference just by making changes to what you already are doing 3-5 times a day.
I also got off all prescription drugs, antacids and several other vitamins / supplements and pain pills etc so ultimately...my liver is not being subjected to as many toxins. Taking drugs may relieve symptoms, but they make the liver worse....so actually I feel like we are really lucky to live in an age where we have the internet and have doctors out there trying to make the truth about nutrition and it's role in healing available to all of us.
If you are on Facebook, there are also lots of free groups that provide so much support. I'm in one with over 10,000 others that are regularly posting amazing health changes with pictures and everything. Anyone can join...it's called PlantPure. There are lots of others too. just search on plant-based you'll be amazed!
p.s. Eating whole food plant based (WFPB) low fat and vegan also reversed the Fatty Liver I forgot to mention that I was diagnosed with back in 2008. It is now gone! So that helps in dealing with the PBC.
Hi and welcome! There are drugs you can take for the itching like naltrexone and rifampin, but they are taxing to an already compromised liver. And there is cholestyramine that you can't take with your other meds because it will bind to them and they will be eliminated from the body. I refuse to take anymore meds than I already do. I've been sunbathing whenever I can, even now that it is getting cold out. It really helps with the itching. I've been researching on how cholestyramine works and I thought, "Why not try oatmeal, cheerios, oat bread and muffins, etc. with every meal to help eliminate cholesterol and bile acids from the body?" So far my itching has subsided.
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New to this group.
Skin pigment changes
Itching 
itchy help. PBC diagnose questions- where do we go now
Itching (I know it is redundant)
