Quick question

[Pinkcrush]

Rheumatology is currently trying to work out what is wrong with me, but alot points to lupus, but I had a positive Ana blood test, and been to see gastroenterology today to be told I've possibly got early stages of primary biliary cirrhosis I just wondered if it's another think linked to lupus

Many thanks ann

[misty14]

Hi pink crush

Sorry to read your having a tough time with your health but have got good specialities on your case. All I know about primary biliary cirrhosis is that it's a stand alone condition because of the word primary!. If it came with illnesses like lupus then it would be described as secondary!. Also it's rare in lupus for the liver to be affected!.

Do hope your Rheumy gives you a diagnosis and treatment soon. You've got a lot to cope with so lots of TLC. Hope you feel better soon. X

[Pinkcrush in reply to misty14]

Thanks misty14

that makes more sense to me, it's like when they were testing my Raynaud's to see if primary,

So do I but next appointment with rheumatology is January so I know it's not going to quick lol

Thank you for your kind words I hope you have lots of tlc too

[misty14 in reply to Pinkcrush]

Hi pink crush

Sadly as you probably know a positive ana is not specific for lupus but shows there's something wrong with your immune system hence the wondering!. January is a long time to wait for your next appt if so unwell. You could try and get a cancellation to bring it forward or your GP could write asking for you to be seen sooner!. Have you had other tests because presumably your not on any treatment yet?. It's tough playing the wait and see game but so many of us do to get a diagnosis!. I'm giving myself TLC thanks for asking as in a lot of pain but got injections on Monday!. Can't wait!. Take care X

[Hidden in reply to Pinkcrush]

Hi - I have a positive ANA and have Sjögren's as my primary disease. PBC is quite often associated with Sjögren's as a comorbidity. medscape.com/viewarticle/45...

[Hidden in reply to Hidden]

In case you're not registered here's what it says: "Primary biliary cirrhosis (PBC) is one of the hepatic diseases that is most frequently associated with Sjogren's syndrome (SS), an autoimmune condition characterized by sicca complex (dry eyes, dry mouth). Between 45% and 90% of patients with PBC can exhibit evidence of sialoadenitis (the 2 together are known as 2SS-PBC)." So if you have both it would be secondary Sjögren's.

[Pinkcrush in reply to Hidden]

I'm still waiting for a lip biopsy

I've see rheumatology twice each time 7 months apart, so it's frustrating to say the least she didn't explain the positive Ana, Google helped but the gastroenterology consultant was very helpful and up front

I know there's no magic cure for any of these conditions I just wanted to know what is going on, this all happened because I got diagnosed with osteoarthritis in fingers and wrist at 41,

Test I've had nail on to see if raynaud's was primarily or secondary, it was primary but wants me to go back in few years. I have livedo reticularis, hair and weight loss, plantar facilities, and feels like walking on a stone most days, multiple joint pain.

Like a shopping list lol

[Hidden in reply to Pinkcrush]

I think many of us here can relate to what you are going through. I was rediagnosed (previously misdiagnosed with RA) last year by a very positive lip biopsy result. I had a nailfold capilliary test too just recently and it was normal but I think mine is definitely secondary to my Sjögren's and the young woman who did it said she was only looking for Scleroderma because, with the other diseases, it wouldn't show up on her testing technology (a handheld device). I have only had Raynauds since my other rheumatic diseases started when I was 47 so it's not primary - which usually starts when people are young.

I feel you are having to wait too long for a rheumatology apt but I know many in same situation. Perhaps, if your lip biopsy is positive, then this could be expedited? Take care and be sure to check results of all the tests you're given yourself.

[Bruson234 in reply to Pinkcrush]

Dear pink Crush,

I also suffer from multiple joint pain, and stiffness. It started with sjogren like sicca symptoms, and I just kept getting more and more

morning stiffness now I have multiple joint pain because my spine was not getting enough fluid. Now got Severe DDD! Please, drink a lot of water. It might just save your back! Also lumps in fingers?

[Pinkcrush]

Just a little update

I've been officially diagnosed with pbc but waiting for the biopsy results so see what stage it's out, but I chickened out of the lip biopsy

Just feels like one huge waiting game and my symptoms just seam to be getting worse but hey ho you have to just carry on with it x

[MissFG in reply to Pinkcrush]

It took me 18 months from being referred from my Endocrinologist. It’s awful to feel yourself declining in health and feeling frustrated. But even once you have a diagnosis most of the treatment can take months to become effective once you’ve found the one you can tolerate.

There’s no quick fix with any autoimmune diseases. However I’d recommend pushing at every opportunity for tests diagnosis’s & treatment and attend every appt. help yourself also by eating a clean healthy gluten free diet supplementing with individual vitamins that you may be low / deficient in. Keep as active as possible but don’t push yourself if you need to rest, rest. And ensure you have a good support network including this forum.

Being sick is a lonely place to be and with it being a long journey family & friends are important. Stay positive it will get better x