Joints pain

[KikiMilena]

Hello everyone,

I was recently diagnosed with PBC. I have had for a long time joints pain, specially in the morning, but for the last month my hands, mostly the right ring and middle fingers have been very sore. Also I don't have enough strength in both hands, but it is worse in my right hand.

My hepatologist referred me to an internist doctor. My blood tests indicated positive AMA-M2, Anti-mitochondrial M2/PDH 70,9, ANA 1/1280, Anti-centromere antibodies B and Anti-centromere antibodies A positive.

So my question is, any of you have experienced progressive joints pain as part of your PBC? Do you have an overlap with other autoinmune disease that has affected your joints?

Thanks for your feedback and support!

Diana

[Nellies47]

Hi.Sorry your feeling so unwell. I have similar symptoms. I was diagnosed with PBC last Dec 2020 and autoimmune hypothyroidism since I was 14yrs.

Since May 21 I have joint pain in wrists, hands and balls of my feet and my ring fingers joint swollen. I'm Ama m2 pos but Ana neg. My crp and platelets are elevated = inflammation as per my rheumatologist., she feels that this is another autoimmune with pbc. Recently I have very dry mouth and eyes and ear pains especially the right one....so I'm waiting to see here again....I'm thinking I have sjorgrens. I do have weakness in both arms and lower legs and numbness in my hands too. I too wonder if the joint pain is PBC and apparently some people do get joint pain. But you have a lot of autoimmune pos blood results so it's hard to know. Have you seen a rheumatologist, what is an internist.

Hope this helps.

Take care .

Nelly

[KikiMilena in reply to Nellies47]

Thanks Nelly! This is very useful. I haven't seen a rheumatologist yet. I have had hypothyroidism for about 15 years now, but it hasn't been related to an autoinmune problem...just wondering if there is something else besides the PBC and AIH going on...

I hope you get into your symptoms and get a more accurate diagnosis. That is vital to get the right treatment. It is frustrating because all of this impacts the quality of life...

Take care,

Diana

[kimphoebe]

Hi there, sorry you are having pain like this, I v had a lot of pain for a number of months now especially in the hands of which the left can hardly use. Recently seen a Rhumatolagist and she done some test for lupus and some other autoimmune disease of which can’t remember now what she called it. Awaiting blood results at the moment. The pain all over my body as been worst the last few weeks and really getting me down so I feel where you are coming from. Spoke to my heptolagist bout it and he said it can’t be the PBC as my bloods are normal for the first time in years. Really confused by this as I’m sure joint pain is one of the symptoms of pbc even if your bloods are normal. 🤔

[KikiMilena]

Hi Phoebe,

I have also read that PBC can produce joint pain. Likewise, my hepatologist didn't comment about it and referred me to an internist. It is tricky because I don't think the best approach is to treat everything separately. The body functions as a system and therefore is more than the sum of its parts... I will search for a doctor especialised in autoinmune diseases. Don't really want to see a rheumatologist because I don't want to be doing this for every next stage of my inmune system attacking different parts of my body... Now joints, tomorrow what will it be?

Thanks for your reply and for sharing your experience. It really helps me. I feel you and I wish your blood results show a way to move forward. We deserve a good quality of life.

[witchiegirl in reply to KikiMilena]

In many ways that’s why a rheumatologist is useful. They can look at your blood results and your symptoms and join up the dots for a large number of AI conditions. I hope you get some answers. I’m another with overlap of PBC and AIH with joint pains. The last doctor I discussed my pain with was quite dismissive so I’ve given up talking till I’m a healthier weight and then maybe I’ll try again. I’m on a lot of medication and it might be that or it might be another AI condition- (I have 6 or 7 already).

[KikiMilena in reply to witchiegirl]

Thanks for sharing. Perhaps, I should see a rheumatologist. It is incredible the lack of empathy of some medical doctors. Don't wait until it gets worse. With AD it is better to act as soon as possible. My best wishes for you!!

[JBH2000]

Hi ! My enzymes have been going up and down for 9 years - last 2 years increasing. I am now on 500 mg twice daily. I have days of severe joint pain and fatigue. Other days are better. I went to the top liver specialist in New York City at Mt Sinai. Bottom line, if you have liver disease- you are going to have these symptom (maybe not all people- but she said that’s why I have real crappy days). Bottom line - try and get out and walk or do some type of exercise, keep hydrated and take Tylenol no more than 2x daily. This is from my doctor - not me!!! I also have sarcoidosis- another autoimmune problem. No clue if it’s related to PBC. I thought I was relatively healthy!!! Don’t sit around - it will be worse.Good luck!

[KikiMilena in reply to JBH2000]

Thanks. This is really helpful. I really need to push me out to exercise again. I stopped after my liver biopsy almost a month ago and with the joints pain and fatigue, I really don't feel I am able to do it. AD are tricky, I just wish I could find a more comprehensive approach to the diseases, instead of treating them one by one, and letting other to develop. My best energy for your journey. Thanks for replying and sharing your experience.