Anyone out there have this disease?
YES!!!! Me for one of the small percentage. You are NOT alone. I have had it for 15 years along with various and sundry other conditions. I was so thrilled to discover this site after 15 years wandering around alone in 'terminal bafflement' (an Irish expression I love)!
Yes I have it also. I have had some type of mctd for several years and a couple years ago I started getting frequent bronchitis. Turns out I have interstitial lun disease. After my last ANA which is specled patteren 1:320 titer we did an AMA which came back positive 1:80. My liver biopsy came back yesterday and I have PBC 🙁 My concern is my liver actually really hurts! 6 Months ago i came home from work and dod an hour or 2 on my treadmill almost everyday and now I can do nothing without causing great pain for myself. I understand noe the connective tissue disease ILD and PBC can all go hand in hand but geez what next? I am also having quite a bit of pain in my chest lately. Not heart attack kind of pain but it hurts, what is that ll about? I see the pulmonollogist tomorrow for my lungs and then liver Dr again next week and when that gets straight I go back on my auto immune meds. I feel so exhausted mostly in the mornings I have to often sit on the shower floor and wait for energy to rinse my hair. Im only 45 🙁 This is just so much all at once.
Hi Carolp ~ Yes i too have PBC satge 3 . i was first diagnosed in April of 2010 and started Urso then i was end stage 1 early stage 2 , done great for two years then became jaundice and levels went up my Gi referred me to Mayo finally . i went to Mayo in Aug and was told i was falling into a group of people the urso just stops working for and that in the next 2-5 years ( depending on how it progresses ) well here i am 8 months later and im jaundice levels higher than when i went to Mayo and now they are checking for liver cancer , i amalso having some swelling in feet , lower legs and liver area as well as liver pain . dont know whats in store just keep saying my prayers ! its important to try to stay positive and keep the faith , its hard because bless us all we all have our bad days .