Back to undiagnosed!: I’m past frustration... - PBC Foundation

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Back to undiagnosed!


I’m past frustration with doctors what will happened is going to happen anyway. After staying on Ursofalk for 17 years developed horrible alargies and stayed with them for two years. Ihave asked my doctor if Ursofalk has anything to do with my alargies and his answer were highly unlikely. I have decided to find out for myself because these alargies didn’t respond to any medications. Stoped my medication one by one till the last which was the Ursofalk then all start calming down! Stoped since January 2018 and never went back to it. Changed my IG specialist and tried to redignos but it felt short of liver biopsy because if if I have gone and done this and proved it was PBC there is no other treatment avalible at the moment! My blood test result don’t look good lots of lung infections and skin infections + small heart condition + other autoimmune conditions but I wish I never have to see a doctor again. Eva

7 Replies

I can see you are very frustrated and I understand. We balance and deal with so many things all at once with our health issues and it just seems like no end.

I hope you might find a doctor that can make you trust again or at least really listen to you and hear what you say. Please take care of yourself the best ways you can.

There is ocaliva & fibrates. You should go see a hepatologist if you are not already seeing one. They can help.

Ocalaiva is still At testing stage here and have tried the other with no success. Thanks

Sorry to hear that! Maybe there are clinical trials that your new doctor can have you participate in. Don’t despair & continue searching for a solution.

Just throwing this out (lung + liver) I’m sure you’ve already been tested for alpha 1-antitrypsin deficiency?

This make sense somehow but not sure if got tested since I have shown emaphsyma in my lungs at the age of 21 and they thought I was a smoker but it was from my grandfather cigarettes who has been dread 4 years before my X-ray of it. Never been told that I have been tested.

Hi jijicat thanks for replying but never heard of it before.

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