Pbc and lupus

[Jess5377]

Just curious how many of my fellow pbc people also have lupus? And if you have lupus which kind do you have? I go back to my rheumatologist tuesday for blood work and xray results. Also I have several doctors that have all done extensive blood work 2 of those 3 sets of results shows I have abnormal ana, 1 of which shows I have a speckled pattern, but this last set if results says my ana is negative. How do i have 2 positive tests and then a negative one. It's so confusing.

[Sona_akb]

Hi

I don’t know if i have lupus or not. My mom had. My ANA is abnormal too with different titers and different patterns in each time. Once diffuse, the other time speckled and last time wax mixed!!

[kingsnorth]

Hi Jess l have lupus and a positive ANA I also have SS. I was diagnosed 15 years ago with lupus. Back then and l think it still is very difficult to diagnosis a positive ANA can be caused by a number of autoimmune diseases and lupus is just one of them. Blood tests can jump in and out of range. I went to the lupus centre in London Bridge hospital who diagnosed me not by blood results alone but by family medical history and my childhood medical history. Good luck

[Knackeredknowle]

Hiya, I was tested positive for ana back in July and Drs were all talking Lupus after I suffered a heart attack.

I had Rheumatology outpatient appointment in September and consultant said ana isn't indicative of lupus - can be anything.

I get all sorts of symptoms including pain in joints, raynaud's and rashes.

Since September I've been diagnosed with pbc but still under investigation.

My lungs play up and I have GERD, with hiatus hernia.

I'm being referred back to Rheumatology as Dr feels there is evidence of another autoimmune disorder. I've been looking at the internet and trying to find something that connects all my complaints.

Good luck in your quest for finding out. Keep us posted.

Best wishes and kind regards

Maxi x

[Eileen-Emily]

Hi I have PBC and ITP I’ve also had to have my thyroid removed. I do not have lupus but my first cousin she has and I have been told the severest form of lupus affecting all her organs. My doctor has told me that if you have one auto immune condition the chances are you will have others. The important thing is to be diagnosed receive the appropriate medication and any pain managed. Good luck everyone have a good Christmas.

[Michi1]

It seems there is a clear pattern where people with one autoimmune disease often have multiple autoimmune diseases. My grandmother, aunt and cousin on my dad's side of the family all had/have lupus. My aunt and cousin were also diagnosed with other types of autoimmune conditions. My mother has had skin issues for years which are now recognized to be autoimmune. I feel lucky to "just have" PBC which is at least to some degree controllable with ursodiol. My personal belief is that a lot of these things diseases are strongly connected to lifestyle and environmental factors: diet, exercise or lack thereof, chemical exposures. Families don't just share genetics, they share lifestyles. I am doing my best to eat clean and live a healthy and stress-free (to the extent that is possible) life. So far, it's working for me.

[jane1964]

Hello I don't have lupus but as well as pbc I have been diagnosed with ANCA vasculitis and sjogrens syndrome.I found diagnosis was difficult because it was difficult to tell which condition was causing which symptoms but fortunately the treatment for the vasculitis has improved my condition a lot.I hope you get some progress with it all soon Jane

[Jess5377]

Okay family I need your opinion.

I received my lab work back and my rheumatologist told me that I did not have lupus or ra. I was diagnosed with undifferentiated connective tissue disease. My lab results from UAB in Birmingham al ( a very large and well know hospital) did my lab work in June with my liver dr they came back for the positive ana's and it showed I have a speckled pattern and the dilatation rate of said positive test. The new rheumatologist that I visited did blood work also and this lab work showed my Ana's are negative...I believe there is a error. I mean I have pbc stage 2 grade 2 how are my ana's all of a sudden negative? The rheumatologist wants me to take a medication called plaquenil but she has informed me that I could go blind taking this medication. I mean should I seek a second opinion? If it were you what would you do? Have any of you taken plaquenil? If so did it help? What are your side effects?

[gwillistexas in reply to Jess5377]

Hello. My ANA Titer was positive and the pattern was speckled. Remarks “a pattern reported as SS-A is considered. That suggests it could be several autoimmune conditions including connective tissue. Research speckled pattern. A wealth of information. 😊

[ninjagirlwebb]

Get a second opinion. Doesn’t hurt to do that. & there might be alternatives besides that medication? Best to explore all options. What does your hepatologist think about that particular recourse & impact on liver?