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precious (@precious)

Primary Biliary Cirrhosis.

Digestive Health | Last Active: Nov 22, 2012 | Replies (13)

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@soozie

I too was recently diagnosed with PBC, two weeks to be exact. I have dealt with the chronic symptons since 2003. Since that time, I have been to one specialist after another with a diagnosis of PTSD, severe allergies,leukemia and the possibility of liver cancer. My life has been hell for 8 years. My family
ganged” up on me and told me that they would have me committed if I did not get my act together. I was told that I was a blemish on the stellar family reputation.
Complicating the situation is that I teach school. Most days I have a real hard time just getting out of bed. The ITCH has progressively gotten worse. It is not just arms and legs…it is hands,feet, chin, back,head, ect..

Fact is, I just went through an attack over the long weekend that once again leveled me to an all time low. I find that the attacks of itching and fatigue can be so intense that any kind of relief is welcomed.

As I said, recently I have seen a specialist that was able to pin point the diagnosis within days. My Primary Care Physician was of a mind that I was just a wigged out 54 year old woman and shoved another pill at me. In June of this year, I made and appointment and DEMANDED that I get the care that I have been paying for over the years. No more pills, no it is stress or allergies, etc… The lesson I learned is that I no longer stand still. I have become proactive with my health.

I have been on ursidiol for 2 weeks. The itch still is intense at times. But, the fear has subsided. And as hard as it was to hear of my diagnosis. My relief is that now I know. I have stage 2 and am very hopeful. I just wish the itching would stop! I too am looking for a network of people to get proactive with this disease. Any suggestions?

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Replies to "I too was recently diagnosed with PBC, two weeks to be exact. I have dealt with..."

Suzie, I know what you are going thru with the fatigue and the itching. I had another liver disease (PSC), and the symptoms you are experiencing are consistent for other liver diseases also.
For the itching (which is undescribable) I took an over-the-counter antihistamine. At first this helped give me some relief. Eventually my GI put me on Chlorestyramine; and that gave me the relief I needed. As far as a topical relief – I got some relief with Sarna anti itch lotion. And a warm bath in Aveeno bath treatment for itchy skin was helpful and soothing.
I, too, taught school, and the fatigue could be overwhelming at times.
I am glad that you now have a diagnosis and are getting the medical care that you need. It can be comforting to know that what you have has a name, and that you are not imagining it. Keep working with your GI and follow a healthy diet and keep up to date on those labs. That is my advice to you.
Rosemary

I have Hep C (diagnosed 97) and cirrhosis (diagnosed 09). Today I just found out my test was positive for PBC! The itching is off the wall. I am so tired of being sick and tired. Ready for any and all suggestions about alternative therapy. My doc said the Hep C triggered the PBC. I have portal hypertension with esophageal varices. Covered in bruises from scratching. Adding insult to injury, my mom is dying. I am trying to stay upbeat! Any suggestions are VERY welcome. TY Shelley

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