So glad to have found this forum. I'm a 58-year-old woman in North Texas, USA. After seeing liver enzymes rise over 9 months or so, was referred by my cardiologist to a gastroenterologist who ordered blood tests and liver biopsy, all of which confirm PBC.
The best news is that the level of liver damage indicates very early-stage disease. It's also interesting to consider that my demoralizing and mounting fatigue may be attributed to an actually witness-able disease process. I'd been wondering whether it was fibromyalgia creeping along its continuum into Chronic Fatigue Syndrome/Myalgic Encephalopathy.
Don't know about you, but I get so weary sensing skepticism in loved ones and medical professionals! I mean, isn't it enough that I feel terrible? Sarcasm=>Thank goodness I have a degenerative liver disease to prove that I'm really, truly sick! (Where is that sarcastic smile emoticon???)
Started 1,000 mg Ursodiol 8 days ago, 500 am and pm. Itching seems to have localized on my scalp, face, and upper torso, starting late in the day and continuing to bedtime. I already take generic Xyzal for allergies at night (every night of my life, for years), and this seems to take the edge off so I can sleep. Benadryl makes me so, so, so sleepy that I'm afraid to add it to my regimen. I'm already sleeping 7+ hours at night and up to 4 hours during the day.
Still, I'd really love to hear thoughts on increasing antihistamine dosage for itching, especially over and above any dose taken for, say, seasonal allergies. In Texas, seasonal allergies are year-round for some of us.
Health Profile: No need to read past here unless you're curious... I thought I'd capture this info while I'm focusing...
My diagnoses that seem relevant these days:
1. Primary Raynaud's Phenomena - Diagnosed age 17
2. Diverticulosis/-itis - First episode age 41, resection surgery age 49
3. Fibromyalgia with Chronic Myofascial Pain - diagnosis age 49-50
4. Depression - Starting in mid-20s, off and on since then; currently very much ON (taking Fetzima + Cytomel)
5. Arthritis - First diagnosis mid-teens, ongoing
6. Ascending Thoracic Aortic Aneurysm - 4.5 cm, stable, found age 55
7. GERD - age 45
8. Menopause - 12 years ago, age 47; on HRT for 7 years
9. Lipedema - Suspected; only recently learned about this: webmd.com/women/guide/liped...
10. Primary Biliary Cholangitis - Last but not least! Diagnosed age 58-1/2