New with skin-related question

[Turquoise2075]

Hi, I'm new here and was diagnosed with PBC in November last year. I'm on 1000mg ursodeoxycholic acid a day. My main symptoms have been pain in the liver area and fatigue. I've also had a strange weakness in my arms at times. More recently I have been getting itching and patches of skin becoming rough and sore, such as on the side of my neck. For 11 years I've had a similar issue on my left foot that has been diagnosed as pustular psoriasis and later a fungal infection. Given psoriasis is autoimmune I'm wondering if I've had autoimmune processes going on in my body for quite some time.

I'm wondering what people have found helpful for skin-related issues? I was already going gluten free for about 2 months before the PBC diagnosis and noticed a dramatic reduction in migraine headaches. I'm currently looking into autoimmune diets. Would love to hear your thoughts.

I am staying positive and wanting to believe it is possible to not just stabilise PBC but reverse some of the autoimmune processes in the body. I've had huge amounts of stress in my life over the past 6 years and can't help wondering if that has been a contributing factor in developing autoimmune issues. It's definitely a wake up call that I need to minimise stress and take care of myself.

[Odieweb]

Hello and welcome to the club. I've been diagnosed for a few years and have had symptoms probably for longer, including very dry skin, and hair falling out, extreme tiredness was and is my main symptom. Fortunately I don't have severe itch, which is a challenge for many. The things I have done apart from taking Urso, have included an autoimmune protocol diet - extreme at first eliminating many foods (I followed a diet recommended by dr Amy Myers and spoke to Dr Sandra Cabot and australian 'liver' doctor aslwo- now I've added in legumes and nuts and don't have gluten, dairy, alcohol and very little sugar. I eat clean foods (as in no additives making them from scratch.) The other thing that helps me is exercise in the morning I try to go for a minimum of a half hour brisk walk. I also do yoga, meditate, and play squash a couple of times a week. My numbers are all stabilised but I still feel ridiculously tired, and wonder how I will keep on working doing what I love to do. I still have very dry skin particularly on my feet, and regularly go to a podiatrist to help with that and use a cream with urea in it twice a day. I hope this helps. I'm in Australia also.

[Turquoise2075 in reply to Odieweb]

Hi and thank you Odieweb. That is very helpful. I was reading about a guy with primary sclerosing cholangitis who improved greatly on an autoimmune diet using a book called the Autoimmune Paleo Cookbook by Mickey Trescott, and wondered whether it could help with PBC also. I have heard of Amy Myers and Sandra Cabot (in some of my internet searches but can't remember where). I'll look further into what they talk about. Currently I am gluten free, mostly dairy free and have very little sugar, but I think there is more I can do and I think autoimmune diets are definitely worth a try. I also exercise daily but like you I get very tired. In the past few years I would get tired just sitting working at a computer and feel I had no choice but to go and lie down for some time before I could get going again. I have only partially stabilised so far on Urso with readings still sometimes abnormal, but I suspect that may be connected with stressful life events I have been going through. I think the more stable everything is in terms of minimal stress, sleep patterns, exercise, diet and emotional well-being too, the more chance there is of keeping PBC in check. I'll have a look at some skin cream options too for dry and itchy skin. Thanks again.

[Odieweb in reply to Turquoise2075]

Skin cream that i has is 30% urea supplied by the podiatrist. this tiredness is v difficult but we have to adjust. And hopefully have understanding people around us.

[Turquoise2075]

Thanks Odieweb

[Lj28]

Check out Dr Fuhrman’s Eat to Live.

There have been numerous autoimmune recoveries for skin and other issues, and a handful

I saw for this condition. I had a friend do this about 10 years ago for lupus, and was she was able to go into full remission and off meds (under a dr care, of course). My husband dropped 100 cholesterol points.

The diet isn’t for everyone, but it really does do what he says.

I think the supplements offered aren’t necessary, but the science in the eating makes sense.

I’ve gone back to this since my diagnosis, but am also taking urso at this time. If everything normalizes, then I plan to work with my dr to reduce and maybe someday be off the urso. I was just diagnosed a couple months ago, and go for my first blood check in later in October.

[Turquoise2075 in reply to Lj28]

Thanks Lj28. I will definitely check out Eat to Live. It's very encouraging hearing positive stories. All the best and hopefully we can normalise our immune responses as much as possible.

[pottery1]

Hi, I've been diagnosed with pbc for a few years now. Although I'm still early stages. My main symptoms are weakness, tiredness and ache in my arms. I read somewhere that this is pbc related, not sure why. I also follow a very low fat diet and can't tolerate animal and dairy fat. I take urso and multi vitamins as advised by my consultant. I was extremely fit and an active mountain climber. I'm still fit but not top of my game anymore due to my arms. Hope this helps. Stay well. Wendy x

[Turquoise2075 in reply to pottery1]

Thanks Wendy. Yes, the arm thing is strange. I first noticed it a few years ago when typing at the computer and it's like it was an effort to do that and almost hard to co-ordinate to type. I then noticed it was an effort to lift my arms. But it isn't there all the time. It's ok at the moment. Good to know about the low fat diet and animal and dairy fat. I've read vitamin D can be good to take with PBC. I'm glad you can still be active though I'm sure it's frustrating not being quite where you were before. You stay well too and all the best x