PBC and Joint Hypermobility Syndrome

[MSJT]

Hi, I have joint hypermobility syndrome and possible PBC. I was just wondering if anyone else has the same two health issues. It would be nice to speak to someone is going through the same things as me.

[Chris21]

I have a diagnosis of both, I also have other AUD and for me, I think PBC is a cause of sjogrens or lupus. I got a diagnosis of hypermobility years ago and as I get older, my joints are not so supple. PBC diagnosis was through blood test and since being on orso it’s all ‘behaving’ itself.

What are the things you are going through, are you still being tested for PBC?

[MSJT in reply to Chris21]

I'm in the middle of being tested for PBC. I had a liver biopsy a month ago and am now waiting for a CT scan. I have elevated liver enzymes which have been elevated for at least 13 years now. They have just put me on Urso as a precaution as they are unsure at the moment. Have you found being on Urso has made your hypermobility worse? Have you had many of the side effects from taking Urso amd how long have you been on it? Sorry for all the questions, I'm a little nervous about taking it.

[Chris21 in reply to MSJT]

Don’t apologise, understandable that you’re feeling a bit nervous. It’s a bit difficult to answer your question, I have joint pain because of lupus and sjogrens. I’ve not noticed any problems with my liver, it was only blood test was apparently showing very high. I was put on orso, have been taking it now for 7 years, since taking it regular blood tests show within range.

If you look through the forum, there has been discussion where people find it can sometimes cause stomach pains but has been counteracted by taking it with milk.

It was only coming on this site that I’ve noticed you’re supposed to take the amount of Orso by weight! In the 7 years I’ve taken 750 mg and no one has checked my weight it all that time. I get an appointment from gastro every 2 years to see how I am (at the beginning it was 6 monthly, which then moved to yearly) rheumatologist is the main person who keeps regular checks of 6 mo this or a year if things are going well.

Would it be worth talking through your concerns with GP? Theirs is an hypermobility forum (if you’re not already on it ) that someone may also be able to help a bit more than me. Or even someone else who reads this and may have more knowledge of taking orso.