PBC and RA

[Nyiah]

I'm wondering if anyone has PBC and RA. If so how did you get the Dr to listen to you. I'm in so much pain all the time.

[jane1964]

Hello Nylan I started with PBC with joint and tendon pain over a number of years I developed worsening pain symptoms I was referred a number of times to rheumatologist with no diagnosis eventually I became very unwell and the fifth rheumatologist made a diagnosis of vasculitis I was put on immunosuppressant treatment and my pain in muscles joints and tendons has improved and my liver function tests also normalized for the first time in 5 years.You need to get a referral to a good experienced rheumatologist I recommend one if the centers of excellence if your in England.Even then you need to document with photos and record your symptoms as I said getting a diagnosis can be hard especially if you have an unusual condition or atypical symptoms.It us worth it though I feel better than I have in years although now I have to be shielding because of the immunosuppressant! I hope you get some help.Jane.

[milo2002 in reply to jane1964]

Totally agree with your story

Dreadful joint pains --hands and feet wrists elbows

Started on immunosuppressive medication

LFt returned to normal as did joint pains

Interestly stopped for 3 weeks and felt dreadful restarted and getting better

[Luciv]

My Docs have just come to realize that although I look healthy, I get lots of weird things. I was initially referred to rheumatologist for suspected sjogrens because of dry eyes and mouth. My labs were negative for sjogrens but positive for RA. Painful swollen joints that orthopedist diagnosed as osteoarthritis were actually RA related, as were vision issues. Nyiah, I hope that you get the attention that you need very soon.

[mjk98]

I have a wonderful RA Dr that refuses to give up on my symtoms she has tested me for just about everything and has referred me to numerous specialists because she finds me unexplained that's the kind of doctor you need someone who has your back it makes you feel better because I have a lot of symptoms I'm tired all the time my bones hurt I have herniated discs in my neck and my lumbar and my body cramps up a lot I have PBC with an overlap of AIH . I have all these muscle cramps 😭 it can be very depressing I also have chronic sinusitis but I have good doctors and that's what you need to get is good Doctors

[Nyiah in reply to mjk98]

Where are you located?

[ksimc]

Hi Nyiah, I have PBC and although have tested negative for RA was in extreme pain in my joints. I couldnt get up from the sofa and struggled walking up the stairs. This was a big shock as i was very fit and healthy and never had any joint pains before. I didnt want to go on steroids or immune suppressents (due to side effects) as my rhematoligist had suggested. I started changing my diet. Cut out dairy, wheat stuff (i only have Eirnkorn flour bread) . I have a friend who is an immunologist and she had wheat was know to cause inflammation. Ate more fish, less meat and chicken. Citrus fruits also. it took sometime but the results have paid off. Although I do suffer from pains still, I have more good days than bad. Somedays I have no pain, when I am in pain its manageable with paracetomal. Hope this helps.

[claygi]

I have both and have since 2017.

[Stub007]

February a year ago shortly after my 80th birthday, I was diagnosed with Stage 3 PBC. I have arthritis (my mom had RA) but not diagnosed as RA yet.

Yes, I have pain. I do self-therapy twice daily—couldn’t function without it—and suffer from very dry eyes, because of my age and PBC. Before the lockdown, I was scheduled for cataract surgery, so my eyesight is not the best.

The more I am sedentary, the more I suffer. When my gym closed, I started riding my bike: 6 miles a day, mostly on the city trail. I take 500 mg Ursodiol daily. A month or so ago, my gastroenterologist set up my next appointment for 12 months. I sometimes experience intense itching (a sign of toxin), mostly on my back.

I am a non-drinker. I try to eat a balanced, low fat, low glycemic diet that includes lots of fresh fruits and veggies. Hope that helps.

Do stay in touch. Best.

[Stub007]

I take the 500 mg Ursodiol TWICE daily. Sorry.