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.
Hello. I became ill in 2010 and was found to have a positive ama at 320 level. I haven't had any liver symptoms and my lfts are fine however from the start of becoming ill I've had electric shock pains bruising hair loss and swollen salivary glands. It has taken six years to be given a diagnosis of small fibre neuropathy and the neurologist I saw at Salford royal who was excellent said he thinks that I may have sjorgrens despite a negative lip biopsy done years ago. PBC and sjorgrens can do exist. For me it's the neuropathy and swelling of the glands along with lack of tears and sweating abnormalities that cause the biggest problems. Along the way of this sox to seven year journey I've encountered some terrible consultants one of which tried to imply that my problems were of a psychiatric nature and who sent his letter following on from consultation to a local doctor at an a and e department this completely breaching confidentiality. That aside though I am now in the care of a good neurologist as sjorgrens can cause neuropathy. The liver team who are at another hospital. See me once a year but aren't that good as they should have in my view known about sjorgrens rather than telling me that the awful symptoms I have are nothing to do with the liver. The problem I guess is PBC isn't your standard illness. That said liver specialists should know about these things and private rheumatologists should too rather than jumping to a conclusion that it's all in a patients mind.
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Hi Nicky, Thank you for your reply. Sorry to hear of your struggles. To clarify, I have cell changes in salivary glands which are enough to cause problems eating/swallowing. My Hastings (small town) rheumatologist did treat me like a hypochondriac & im sure has told his students who sit in on sessions that it's in my head as that's the way he treats me. He never even requested my files from UCLH (highly respected top rheumatology dept) which would've evidenced so many things to him. I asked him to but he refused. He also refused to do an AMA test. I had to leave him & go to London UCLH for this. He's just written a letter stating that I have no evidence of any Sjogren's syndrome or anything else when I asked to be moved from his care to another dr. He also stated in this letter I've never had any connective tissue disorder which is totally wrong (7 years of it as confirmed by UCLH) I made a formal complaint because I've had three of the best eye hospitals (all centers of excellence) diagnose "very severe dry eye syndrome" evidenced by Schirmer's test showing zero in both eyes. Yet he maintains I have no dry eye from his "perspective". Even the ophthalmology department at the hospital he practices at has confirmed this and recommended punctual plugs! I went to the director of the eye hospital I attend & he told me the hastings rheumatologist was not doing appropriate test. The schirmers test must be done with anaesthesia to rule out "reflex tears" such as crying which I was crying when he shoved the strips in my eyes. quite shocked that a dr would write something like this so easily disproved with evidence. Can't believe that I have to go all the way back to London to get good care. I have not had the report yet from the salivary scans because it was only done last week but the technician told me I definitely had "early signs". I think she was referring to Sjogren's but I've now been referred to the hepatologist so clearly they are considering PBC.
I too have terrible sweats, pain everywhere pins and needles in my lower legs and my wrists/arms which tested positive for carpel tunnel, just had one operated on as it showed severe on nerve tests. I too have loss of hair, and lots of other things.
Thank you for replying! I'm finding it quite lonely in the ill world! No one I feel that I can talk to about this.
I have Sjogrens and PBC. I can try to answer any questions you may have. I have severe dry eyes and mouth I use eye drops and sip water all day for my dry mouth and throat. I take plaqunil for the Sjogrens and URSO for the PBC. I have to see a eye doctor once every 6 months to check my eyes plaquenil can cause eye damage in some so far I am fine in that area. It took years to finally diagnose both disease I went to different doctors for years with different symptoms felt like I was on a dead end until I went to The University Of Michigan where they did a salivary gland biopsy to diagnose the Sjogrens along with positive ANA and a liver biopsy with positive AMA to diagnose the PBC.
Thank you for your reply Michiganpbc! I will definitely be in touch. Can I ask what else you do for the dry eye? Mine is super severe. I have to use heat/moisture goggles twice a day. Getting moisture chamber specs for computer and even buying a special led light machine. I'm on cyclosporine & doxycycline (antibiotic) for 3 months in prep for surgery punctual plugs but I've heard some bad things about getting plugs. So your biopsies were positive. Does the liver biopsy have a specific makeup that concludes PBC rather than Sjogren's? I understand Sjogren's can affect the liver too? And are your LFt's elevated? Mine are not right now. Thank you. And do you work full time? I'm finding it impossible. Thank you!!
Hi. I was diagnosed with Pbc in 2012 about 2years later developed dry eyes and mouth. I am stage 4 with cirrhosis but my bloods are good just now. I feel that I have more problems with my eyes than my liver. I use Carbomer drops during the day and lacrilube at night. I have tried eye mask also but just recently bought moisture retaining glasses which I feel are helping. I asked to be referred to an ophthalmologist to see if I was getting the best treatment will see him next few weeks. Also I am prone to eye infections. Seem to get about two infections a year.
Sorry to hear you are at stage 4. Interesting that the dry eyes are more problematic. It is debilitating fir me. I'm just about to buy the moisture chamber glasses too! Good to hear they help. Are your bloods good because of meds? I'm presuming you had raised LFT's and positive AMA and raised other indicators? My AMA is 360. It was 160 7 years ago but I was told this was low!!! Which I now know it's not. For 7 years I've been having problems and no one worked it out until last week! My understanding is that anything over 80 should be checked out? I've had symptoms for many years so a little concerned about that. What I don't get is that all my bloods are normal except AMA. I eat ridiculously well, hardly any sugar, cut back on alcohol over the last 6 months to 6 u p/w tops. Maybe that affects bloods? In the past def had abnormal bloods inc lft's but only just outside. Thank you for your reply! 😊
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