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PBC Foundation
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Hi. My name is Dena. I have PBC.

I took this photo this morning after breakfast of my skin on my arms and hands. I also have these bruised and torn skin areas on my face, neck, and chest. I've mentioned before about having extreme itching and this is what I get when I scratch. I try to keep my fingernails cut short so I don't rip or tear my skin, however, I bruise and tear my skin so easily.

I have changed my diet to foods rich in Vitamins A, B, C, D, E, and K. I am also taking supplements for vitamins.

I noticed the majority of people with this disease are having weight problems with being too heavy. My cross to bear is being underweight. Prior to being diagnosed with PBC, I had severe issues with acid reflux. My doctor chose to perform a gastrectomy to take care of that. I was 170 lbs and within a year, I lost 50 lbs. I'm currently 88 lbs and I'm trying to gain weight.

But then, I got sick. I got some internal infection in my lungs and it made me very sick - apparently on the brink of death. I wish I could tell you more about my hospital experience, but I truly don't remember. I was too weak to battle the infection. I was put on a breathing machine and stayed in the hospital for approximately 2 weeks. The, I had to go to a rehab facility in order to get my strength back. This happened to me twice in 2017.

I had lost my mind. I didn't know who I was or where I was. I couldn't remember the people around me. I couldn't remember what day or what year it was. I was seeing things that actually weren't there. It was the most bizarre feeling I've ever had in my life.

I am still on oxygen, 2 liters 24/7 days a week. My doctor says I have COPD, so I'll be on the O2 for the rest of my life. I'm taking Ursodiol, Ocaliva, and Creon for the PBC. I also take other medications to keep my blood pressure in check. 13 pills/capsules a day - not to mention the supplements.

Any of you have similar experiences? I welcome any feedback from any of you. Since I've joined this group, I have learned so much. I'll be seeing my doctor in two weeks and I have a list of things to ask him.

13 Replies
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i was told those marks from ur skin getting to thin i get them to and had them before pbc

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Same here. I usually don’t get one unless something binds on my arm, like my purse ( usually too heavy). Have pretty much always had thin skin but maybe more delicate In the last 10.

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I’m sorry to hear all the obstacles you are facing every day. I too, am one who struggles with my weight. A really strong wind would blow me away. We do the best we can. Pray a lot & give it to God. 🙏🏻✨

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I used to be overweight and it was fairly easy to lose weight from time to time. But trying to gain weight is so much harder. Especially with the added challenges from the PBC.

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Yes it’s very hard for me to gain also. I’m going to tell my dr I need to gain weight. Maybe there’s something I can drink that might help, heck I don’t know. I have always been on the small side, fast metabolism, cantankerous thyroid, now PBC & trying to more careful what I eat. Have always been able to eat anything & not gain weight. I take Ocaliva & don’t know if that may affect weight also. It’s all hodgepodge but we keep on dancing...in our hearts anyway. ❣️🤗

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How long you have pbc and how old are you ?

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I was diagnosed in 2016. I am 59 years old.

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You have got to try a raw vegan diet, it will completely transform your life! It will clear you of all disease in due time.

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Have you got pbc if so have you been able to cure it with a raw vegan diet.

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You poor thing

So many things happening and yet things are what they are

I have pbc and up until now my pbc has been relatively stress free. I am overweight tho.

Take care

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Bruising so easily is my body’s way of reminding me that I have a liver disease! Hot dogs have the same effect!

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Good Morning...Oh my...I have had those marks from deep itching. First I thought it was PBC related, then food related. Could have been, but when I look back...MAJOR stress was occurring too. I'm convinced it's stress induced histamines. Once the itch starts, it seems not to stop. I have tried drinking a TBSP baking soda with some lime juice and water. Seems to help as it alkalizes the system. Also, warm, not hot baths with a cup or so baking soda will sooth the itchy skin. There are several lotions on the market for it too!

As far as weight goes, there are some wonderful very high calorie protein powders available online. When mom was so sick, we used these to add some bulk to her frame. Liquids are easy to ingest. You have lots going on and I'm sure it's overwhelming. I hope you can find some solutions here from all these fine folks. Take care and let us know how you are from time to time

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Hi Dena, you poor thing you're really having a tough time. I remember my skin looking like that from scratching, once you start you just can't stop. I found keeping it well moisturiser helped, non perfumed cream like E45. I lost weight when my liver deteriated because it doesn't absorb nutrients properly plus you've already got stomach problems so not a good combination. Bruising might be a result of low platelets as well. Have you been assessed for liver transplant or are you not at that stage yet. I'm 50, had my transplant last June, had pbc for 22 yrs 😊

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