Yesterday I went to the gp with shoulder pain,ok I've had years but just thought muscle prob,but as soon as she examined me she said arthritis as so crunchy
My problem is rheumatology say joint problems are all caused by pbc attacking joints, I would like more information on this,so I can understand it better,does any one have information or know where I can get it
Many thanks ann
Hi
Since diagnosed the Drs kept putting my joint/muscle pain down to pbc. My shoulders are that bad now that i struggle with some clothes(only 45). Recently been fir scans which confirm osteoarthritis and looks like i need operation.
We all know our own bodies and when something is wrong.
I hope you get sorted soon,
Best wishes Angela x
I know that feeling I'm 45 too but yes I just want to understand more as my gastro consultant say go on internet for information
Hope you get it sorted too
Joint pain is one of the later symptoms of PBC. I haven't read any research on why it occurs and maybe this research does not exist. I know that people with PBC are more prone to all sorts of autoimmune issues. Arthritis is an autoimmune condition. I have scalp psoriasis and my dermatologist said that people with this can also develop psoriastic arthritis. Think it is because our own bodies are prone to be too sensitive and attacks itself. Same for thyroid issues, also part of autoimmune.
Hope this helps.
There are many reasons for joint pain...foods we eat, hormone imbalance. As far as Arthritis, osteoarthritis is not autoimmune. There are other types that are. Exactly what type of Arthritis does Pinkcrush have? Don't think she said other than she had Rheumatology issues, not rheumatoid arthritis. I do not recall reading the correlation between later stage PBC and joint pain. If you have a reference, could you please share that?
Here it is about pbc & joint pain:
mayoclinic.org/diseases-con...
Although these symptoms may occur, I am not sure if PBC is the culprit in all situations. Thanks for sharing your information. Always like to read new articles and learn new facts. Much appreciated
I don't think there is research indicating that pbc is a cause of this pain, only that it is a symptom.
I'm not a doctor, but, it looks to me that PBC is not necessarily directly responsible for many other medical conditions that we have. Rather, our autoimmune system, that is not functioning properly, causes all sorts of disorders, with PBC being one of them. Many of us with PBC, also have thyroid disorder, chronic yeast infection, arthritis, and osteopenia/osteoporosis (new studies suggest that they may be linked to autoimmune system), etc.
I have several conditions I named above, but, I don't blame PBC in it. Thyroid disorder was diagnosed years before I was diagnosed with PBC. It was the first problem I had with my autoimmune system. If you wonder how do I know that I didn't have PBC back then, it is simple, I injured my back and was on Celebrex for a year. During that time period, my doctor was testing my LFTs every three and they always came back normal.
From an article:
"Primary biliary cholangitis often occurs in people with autoimmune disorders, such as rheumatoid arthritis, scleroderma, Sjögren syndrome, or autoimmune thyroiditis. An autoimmune cause is also thought possible because more than 95% of people with PBC have certain abnormal antibodies in their blood."
I agree with everything you say l had childhood rheumatoid arthritis 15 years ago diagnosed with lupus and sjogrens 2 years ago diagnosed with PBC. Sogrens usually goes hand in hand with PBC. If you have a dodgy immune system you will likely have many conditions. I fortunately haven’t got joint pain l think it’s because as a child when first diagnosed with rheumatoid arthritis l was prescribed COD liver oil and have taken it every day since I’m now 69.
I had the thyroid antibodies many years before pbc. My TSH was normal at the time, but my doctor was thorough & tested for the thyroid antibodies despite me not having symptoms. I think he said because thyroid issues are common among women so he checks as part of annual physical.
I know, like you because my blood was monitored for LFT’s every 3 months since I took statins for cholesterol.
Same here. I had no symptoms, but, the blood test showed the presence of thyroid antibodies. I took the medicine for year and then stopped. The labs were all good for many years, until this year, when TSH became too high. So, I'm taking thyroid meds again.
My TSH was normal until early last year; went hyper. After a radioactive iodine uptake scan, was put on anti thyroid meds which then made it hypo. We stopped the meds & it went back to normal after a few months. Have to check again in July.
This is the right approach. If my labs will be stable for several months, I may do the same, stop taking the meds for a while. Last time I was on meds for one year, then stopped and was good for almost 20 years (even though the antibodies remained present, they never go away). I'm hypothyroid (Hashimoto). It'd be good not to take meds for a while.
Good luck!
As I mentioned on another thread, I have anti bodies for both Hashimoto's & Graves, so I think that’s why it quickly adjusted after a few months of meds.
Hope your numbers stabilize as well.
Thanks!
My rheumatologist did say she thinks I have Sjögren but because I wont have a lip biopsy it's not confirmed,but I do have raynards
I think rather than the pbc I need to read more about the autoimmune system just so I can understand more,
Read "The Autoimmune Solution" by Dr. Amy Myers. This all makes sense. The root cause of all autoimmunity is a genetic predisposition + a trigger. As individuals this can be different for everyone but the commonality seems to be finding the triggers and reducing the inflammation helps all these conditions. It's fascinating stuff. So no, your PBC isn't causing arthritis but your arthritis symptoms are also autoimmune. Have your doctor test you for celiac disease. I'd try getting some exercise and drinking lots of water and eating no processed foods and as little sugar as you can for a while and see what happens. Sugar is highly inflammatory. That alone could help. If it doesn't, do an elimination diet and see if there are foods that make you sick when you reintroduce them. 40% of PBC patients also have celiac disease, and many of those are asymptomatic. If you're tested after you cut out gluten and you have celiac, the test will come out with a false negative, as it tests for an antibody in your blood.
Excellent points. My doctor tested me for a bunch of stuff including celiac. In general an anti inflammatory diet is beneficial.
I think it's been said in earlier replies in different ways, but what we have in common is a fault in our autoimmune system which itself is transported around and through our bodies in our bloodstream. In places where this faulty system causes damage to particular organs, bones, skin, nerves, etc., names, labels have been applied where evidence has been gathered and a cause has been partially identified. The names and labels often bear the name of the man (usually!) who led the investigating team. eg, Hashimoto's, Sjogren's, Raynaud's. (I don't know how PBC escaped being named after a man.) But we have each just one body, one giant factory that no-one yet knows all about how it works and we have a collection of labels for conditions that different groups of specialists have studied. What we have very few of is people who join the dots between all of these conditions in one body and point us to how best to manage our health. In the meantime, what we do have is very good evidence of how a healthy person can stay in good health through having the means to healthy association with others, good food, exercise, adequate shelter, and recreation. If we, autoimmune-compromised people continue to have this, or adopt it as a new and better regime, as ninjagirlwebb considers, our bodies will rebalance as best they can. This is what we can do for ourselves with or without our doctors.
Nicely put.
Joint/bone/muscle aches are common with PBC I believe. Mine worsened when I came off pred but have been taking Turmeric capsules and this has sorted out my frozen shoulder and improved aches and pains by about 90% - amazing!! I was tested for RA but this came back negative.
Hope this helps.
I would suggest a rheumatologist. I have figured out over the years specialists are the best in there areas of expertise. It may be time consuming but it is worth it
Information please
Does anyone know if URSO would br prescribed to someone with advanced stage PBC at diagnosis?
Stages of PBC-Prognosis-Next Steps?
Help, won esa appeal, now waiting for increase in payment/back pay,
P.B.C and bilirubin levels
