Hi everyone, I'm new to this. I have not been diagnosed with PBC. I became ill starting about seven years ago and it was found that I had a positive AMA but it was low and no one followed up on it. I was also diagnosed with chronic calcific tendinitis in my hips and shoulders bilaterally (apparently unheard of in the hips) which was causing my main sources of pain and so I got caught up in dealing with that. I still have it but it's much better after six procedures to remove the calcifications. Seven years later and I have severe fatigue, severe dry eye syndrome, constant itchiness and rashes, severe rosacea etc. For me the severe fatigue is the worst part of it. My AMA is now 360. I don't have abnormal LFTs. But I noticed in my past medical records I have. Only a week ago I found out that my saliva gland tests were abnormal which can be consistent with PBC and Sjogren's. The first thing that they thought it was Sjogren's syndrome. I am being referred to hepatologist to "rule out" PBC. Has anyone else been in this situation? I understand that Sjogren's can develop into a liver disease. I've had some other things that Are specifically liver disease signs such as stark white stools but I haven't had that very often. This is not part of Sjögren's syndrome. Sjogren's syndrome and PBC can coexist. Is there anyone out there that has both?
Is there anyone out there that has Sicca symptoms, specifically severe dry eye syndrome? It's the being in limbo which is a nightmare. It has been extremely slow where I live in Hastings. They've actually been incredibly negligent and I'm having to make a complaint about them. Less than two months ago I decided to go back to UCLH in London and within two months they are referring me to hepatologist and have done salivary US scans which were positive. Such a difference the treatment. My eyes are so bad that I can't even look at computers or devices for very long.
I've never really been Ill before or had any allergies or any autoimmune anything. I've heard of autoimmune diseases of course and I now sure do have a lot of sympathy and empathy for people diagnosed with one. If there's anyone out there who lives in Hastings UK or nearby would love to hear from you.