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PBC Foundation
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Swelling of joints

Hi All,

Just curious to know if any of you suffer from excessive fluid on your joints? Knee & ankle? This is a new addition for me. I had fluid drained from my ankle over a month ago followed by steroid injection into joint, but last week my knee/leg grossly swelled up. Had an aspirate & >80mls. of fluid was drained from my knee by medics at the local hospital. Very worried about what is causing it? Dx PBC in 2008 at age 37. Have all other symptoms us PBCers suffer with - horrendous itch, Osteopaenia, inflammation of feet/ hands, swollen lymphnodes, synovitis, dry eyes etc etc.

Thanks for reading my post - I would be grateful for your response which may alleviate my worries!

4 Replies

I have had really bad swelling of one ankle - extremely painful for many months. I have Raynauds syndrome as well as PBC (and systemic schlerosis...). I read all the information on the tablet literature and saw that Coracten - prescribed for Raynauds could cause local limb swelling. I stopped taking the night time pill and the swelling went away.. Unfortunately now the weather is turning colder I have just had to start taking the night time one again (or risk losing a finger). Anyway, might be worth reading the leaflet of all your pills and seeing if something you are taking is causing it? Good luck!


I would talk to the PBC foundation people - link to their site at the top of this page. While some or all of your symptoms may be down to PBC, I do think your GP should have been checking for other things - to either rule them out, or to give you appropriate treatment if needed - as well trying to do far, far more about the swelling. Are you diagnosed with other conditions? Eg: are the dry eyes down to Sjorgens syndrome (common in people with PBC ) and if so have you been given medication/drops?

I would not accept this state of affairs, but get advice from the PBC Foundation people - make sure you have copies of all your tests, letters, history of PBC medication, blood tests and scans etc. as it will help them to advise you - and then you can go back to GP or other medics and ask for more. Also, they can give all sorts of advice on foods that help/don't, dietary changes, exercise, trigger symptoms etc.

Most may not be necessary, but the treatment you are getting just seems like 'alarm' response - just when something happens - rather than medics actually getting to the root cause of what is going on, and treating and (if possible solving/removing) the cause.

Hope you get more sorted,

take care.


Hi Belgravia, listen to GrittyReads advice! I have big binder of test results, scans, pathology, etc that I drag to dr office with me at all times. My ophthalmologist prescribed Restasis ( for dry eyes) -- said lot of person with autu-immune issues have dry eyes---- I have Sjorgens so it fits......I see a rheumatologist because I have psoriatic arthritis ( inflammatory) , get swollen joints too. When your knee was aspirated, did they do any lab work on the fluid? ' cause if they didn't, you should be asking why not done. If your thyroid is low, could affect joints too, have to test levels more than regular people because of PBC. I am not doctor, not dispensing medical advice, just my own experience that we have to advocate for ourselves, sometimes it very easy to 'blame' PBC for everything. But we are at greater likelihood of all kinds of different , sometimes obscure, auto-immune conditions that require treatment separate from PBC treatments. Don't be shy asking questions of dr, nursing, lab staff, Internet, etc, really important to educate self ( little by little it adds up to a lot of knowledge). My hepatolgist told me to see Rheumatologist,(over 100 different types of arthritis), & my GP loves it that I see those other dr's, ask your GP to refer you to different specialities for assessment, second opinion type stuff To rule out or include PBC as reason of ALL complaints, best course of action, etc. I find this site very helpful & have come to appreciate the diverse ways this PBC will present. Good luck to you in finding your path!

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Thank you all for your replies. I have got a referral to Rheumatology since. Hopefully I won't have to wait too long for appointment. Thankfully I have a good eye consultant whom I m attending for years prior to PBC with kerataconus. I'm using plenty of eye drops for dry eye now.

Yes Belliver I had lab work done after aspiration Lymphocytes showed >1000 No growth, gram st Neg. but gross inflammation. Prescribed NSAID's & rest. However within a week the knee has swelled up again & I am barely able to walk. My TSH & T4 are normal. I am just anxious to get back to mobility & back to work!

I refer to this site regularly & it is very useful even though I don't post too often. Thanks to all the subscribers & Foundation!


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