In my journey to diagnosis I saw a rheumatologist who referred me to a gastro, I then followed up with the rheumatologist and expected him to say that I have my diagnosis and won't need to see him anymore. He didn't say that, what he did say is that PBC is often part of a broader autoimmune disease overlay. He's not sure yet what I have, but at this point his best guess is sjogrens syndrome or lupus. He says that he needs more information that will likely happen as time goes on and more symptoms pop up or if I can get blood tests during a flare up.
Has anyone else been told this or has been diagnosed with other diseases as well as PBC?
What symptoms led you to the rheumatologist? PBC patients are more prone to have other autoimmune conditions as well.
Prior to pbc diagnosis, I already had thyroid antibodies/goiter, dry eyes, & scalp psoriasis. I wasn’t aware of my thyroid condition at all, but it manifasted in routine lab work.
My primary care doctor who happens to be a gastroentrologist noted my elevated LFT’s & sent me to the hepatologist for futher investigation. A biopsy confirmed PBC.
Because of PBC, I see my hepatologist quarterly. I see my other doctors once a year or as needed as per their discretion.
If you don't have any issues that necessitate a rheumatologist, usually a primary care physician would oversee your care. This is for the US. Not sure how it works overseas.
I am in Canada, here we have a family doctor who then sends you to a specialist if needed. I saw my family dr with a laundry list of symptoms (including mild joint pain, dry eyes/mouth, fatigue, itching, hair loss, flushed skin, headaches and more) and he didn't know what was going on so did a bunch of tests and then referred me to the rheumatologist when I was positive for ANA & AMA. The rheumatologist looked at the AMA and sent me to a gastro.
A lot of this stuff is hit or miss with diagnosis. Given your symptoms, suspect the rheumatologist is being thorough as PBC can’t explain every symptom you have. I think you should follow his guidance. Or maybe get another medical opinion if you feel uncomfortable about how this is being pursued.
The most important thing is having a doctor who you can trust who listens to your concerns to guide you through all of this. This stuff is so scary, but it is less so when you have a competent doctor looking out for you.
Keep us posted & Hope you find your answers soon. You need to be put on urso as soon as possible for the pbc.
It does seem to follow that once you have one autoimmune disease you are more likely to collect others along your journey. I have had PBC for 11years, 18 mths ago was diagnosed with Polymyalgia Rheumatica (PMR) and now my blood work is showing markers for Scleroderma! I am to have further testing for this in the comming months. Despite this I lead a very full life in retirement albeit at a slower pace than 2 yrs ago!
Hello I have had pbc for around 10 years.I also have sjogrens and a type of vasculitis these developed around 3 years ago.I was treated for the pbc alone until last year as it took a long time to get the other conditions diagnosed Having them treated has improved how I feel so if your doctor's think there's more than pbc it's definitely worth getting it looked into.Jane
The UK-PBC cohort, which has over 6,500 PBC patients enlisted, gave us some interesting information. Around 42% of people with PBC will have at least one other autoimmune condition.
Many patients will have sicca syndrome (dryness) but not necessarily Sjogren's Syndrome. Of the diseases that were in therem the most common was thyroid at about 19%.
So, yes it is possible to have other autoimmune conditions but the latest figures tell us that more than half do not.
From what you say, it seems that - as yet - you have not been diagnosed as having PBC. You mention AMAs being present - they are an indicator for PBC, but some people 'just have them' and do not have , or develop, PBC.
You do not say if your blood tests included 'liver function tests' (lfts) and related bloods - although I would expect that they have been checked. If you have AMAs your lfts should have been checked, as AMAs - plus certain raised lfts (and some other bloods) in ways typical of PBC, would be a firm diagnosis of PBC. If your lfts are normal, you probably do not have PBC, as yet, and may never develop it, but you should be closely monitored for a while, and eventually have lft tests every year to keep checking for PBC.
While, as Robert says, it is common for people with autoimmune conditions to have - or develop - other autoimmune conditions, you may not have PBC, and may never develop it. So, please make sure that your Drs have done thorough lfts and blood tests. For more information about PBC and it's formal/official diagnosis, do check out the 'PBC Foundation' website (see the link alongside Robert's post), as the site has loads of info about PBC, particularly about the formal/official route to diagnosis.
Hope this helps, but above all: try to reduce all worry and anxiety - always worse for all autoimmune conditions! So, have fun, treat yourself, and do lots of things that you love: … plus lots of exercise - dancing is great! - and a good diet: check out the PBC F site again for advice and recipes.
The gastro diagnosed me with PBC as I have abnormal LFT's but since my ALP is still normal, and I am young to have the disease at 30, he is unsure whether I need URSO yet. I have a fibroscan coming up and he says based on that he will decide whether to put me on URSO or wait until my ALP rises since it could be a very long time until it does.
Otherwise, I am not too worried about PBC, I'm more wondering what a sudden downward turn in my symptoms means. Does PBC have "flare ups" like some other autoimmune diseases and if not, is that a sign of a different one like the rheumatologist suggested I have?
I don't have PBC, just AMAs - first noted in 1992 - so I'm not able to comment on 'flare ups' with PBC. Hopefully someone else will comment - though you may have to ask specifically in another post.
However, because in 2008 a (new-to-me) Liver Consultant gave me an odd PBC-ish diagnosis (which played havoc with insurance) my UK GP eventually sent me to see one of the UK's leading PBC consultants. After extensive testing and investigation - where all lfts were perfect - he confirmed that I don't have PBC, and at my age (then late 50s), I was unlikely to develop it.
He talked of raised levels of ALP and to a lesser degree AST and ALT as being the lfts that most liver specialists look for when checking for PBC, but he said that he also set great store by the levels of GGT.
I know it is different in other countries, where Gastros play a wider role than here in the UK, but as I even had a liver specialist get it wrong, I would wait and see what happens with the fibroscan. But, if you still have any doubts, then maybe ask to see a liver specialist, preferably one who is a PBC consultant.
I have PBC, recently diagnosed Celiac Disease, and arthritis which thankfully isn't too bad. I have read that you're more likely to get other autoimmune conditions if you have PBC and it makes sense. In my case, I just hope 3 is enough!!
According to this paper, having three or more autoimmune conditions is called multiple autoimmune syndrome (MAS), and about 25 percent of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases.
Hi 321 yes samilar situation to be redignosed but there were no suggestions of the other conditions you mentioned! I wouldn’t hear from them before the 23/10.
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