Muscle pain

[Yeali4598]

I have pbc, is it normal to have to painful joints, (knee, ankles in particular) seems like they're getting worse even though I've lost weight and exercise more

[hells456]

I have PBC too and my consultant says painful joints are quite common with us. He told me to use heat for relief to keep painkillers to a minimum. For me the pain is worse in my wrists, elbows and one hip. After a bone scan and blood tests I was put on a high dose of vitamin D and they haven't got any worse since.

[Yeali4598 in reply to hells456]

Thanks, I take vit d everyday anyway, my knee is the worst, got 2nd appointment with physio next wk so will see if they can help further 🤞🤞

[AyrshireK]

How firm were they on the Primary Biliary Cholangitis diagnosis? Did they rule out any possible crossover with Auto Immune Hepatitis? Sometimes the two go together AIH/PBC crossover and certainly many, many patients with AIH experience severe muscle and joint pain. Are your magnesium/potassium levels ok as these can sometimes cause joint issues?

Katie

[Yeali4598 in reply to AyrshireK]

My consultant says it's a form of pbc also autoimmune was mentioned , she couldn't give it an exact diagnosis as it unusual that the medication that they trying, steroids ect didn't work on me at all, I'm going to phone my consultant and ask her advice about the pain

[Kakey in reply to Yeali4598]

I have painful joints, no muscle pain. I haven't spoken to anyone about it yet.

Steroids aren't used for PBC, so that is consistent with a PBC diagnosis, but not with AIH.

[Yeali4598 in reply to Kakey]

They were trying different meds because they were finding it hard to give a straight diagnosis, in my consultants words I am a "very unusual and interesting case" it's been nearly 4 years and they gave it a sort of diagnosis in December just past, they are treating it as pbc with other things going on as well , that's the best explanation I can give

[AyrshireK in reply to Yeali4598]

Did you have a liver biopsy to look at the liver on a cellular level?

They certainly use a trial of steroids to see if bloods come down when they are investigating possible AIH. So, they didn't bring levels down in your case then perhaps it is indeed something else.

Anyway, check out the pain issue with your consultant.

Katie

[Yeali4598 in reply to AyrshireK]

Yes I've had liver biopsy

[Kakey in reply to Yeali4598]

Took me a long time to be diagnosed too, although a biopsy and Urso response showed it was PBC, not AIH or both. Has Urso helped you at all?

That must be so frustrating and worrying for you. I'm sorry you're going through that.

[Yeali4598]

Thanks it is, been on urso since 2019, taken my levels down a bit but not enough, theyre trying me on a couple of other meds at the moment along with urso to try and slow down the damage, it's not drink related or fatty liver related, theyre not sure what's caused it