Three months since diagnosis and Urso

[Katienharley]

I’m three months into the diagnosis of this disease and prescription of URSO. I’m wondering what everyone has experienced with side effects and/or the symptoms of PBC.

At the end of July I was rushed to the hospital. I went to work and simply leaned down to put my lunch on the floor and immediately had shooting pains up my neck and an instant headache. The hospital ran blood work and put me on IV and pain meds and came to the assumption it was a migraine even though the ER Dr said the neck pain wasn’t consistent with migraines. I’ve never had a migraine before either. Anyway I was instructed by the ER Dr not to return to work until I followed up with the hospital again or my GP within a week. Since that incident I’ve had major back pain, headaches, muscle spasms and have popped out five ribs in three weeks. I’ve been regularly going to active release therapy (shock wave), dry needle and physio, and deep tissue massage. My GP is starting to believe that this may be side effects of URSO. I have a desk job which is the reason why the delay in going back to work. If I sit or stand (still) I start to seize up again. I have to keep moving to feel “good”.

I’m trying to gain some insight if this is my new life with PBC and URSO or of this is all a big coincidence.

Thank you everyone! Xoxo

[Odieweb]

I'm so sorry to hear you've had those symptoms. I fortunately have had none, having been on urso for 4 months not. I hope that you get to recover and find out the causes soon.

[Candy12]

That sounds really painful, it’s not anything I’ve read about or experienced with PBC or URSO.

Did the ER do any kind of scan, having bent over at the time the pain started would suggest some form of injury. I’d request further tests if it were me to rule out any bone injury especially if you’ve popped ribs out. I hope you get it sorted soon, it sounds awful, let us know how you get on.

[Ballymahon2]

I am on urso for past two years with no side effects

[Biddyb]

You could call PBC foundation I take it you are a member and ask them if they have come across this. Sounds more like you've done some damage whilst bending and popping ribs is odd, get seen by by your GP ASAP I would say, it’s a job to know what to blame on PBC but you need to get medical advice for sure. Take care let us know what happens

[cazer]

Never heard of those symptoms although I do get an occasional migraine headache but think it's unrelated to pbc..

Sometimes when blood tests are done it shows up an underlying condition... e. g pbc... But may be unrelated to the problem they are looking at... Rather than the pbc itself...

This sounds more like maybe a physical /joint or back problem... Have any xrays been done??

Please don't let them fob you off with pbc if there is a 2nd problem going on?? A lot of pbcers do have joint pain.. But ribs popping sounds strange... Unless you have excess fluid... This should show on an ultrasound..

There are other autoimmune conditions which cause loose joints... My mum has a rare one and her joints go out very easily without really any particular exertion...

I hope you can get some answers....,

Best wishes cazer.

P. S contact the pbc foundation for more information... X

[HealthyChik]

Hi, I’ve been on URSO for a little over a year with a good response and absolutely no side effects. Just prior to being diagnosed with PBC, I experienced a ruptured cervical disc in my neck which was probably the most painful thing I’ve ever experienced. Was told that I have degenerative disc disease and this is common and occurs as we age. I know that PBC puts us at risk for osteoporosis so it could possibly be a connection there. Not sure if this is your issue, but might be worth asking about. Have you had a DEXA/bone density scan, vitamin D levels checked, etc?

Best of luck💕😊

[Hidden]

Katien I never had, nor heard of anyone having these symptoms but my experience is not so wide that this is saying much. What cazer says about other AI conditions, and since it is common to have a few AI's if you have one, I would strongly advise you to contact the PBC Foundation. They would be well placed to help direct you to finding a cause for your symptoms which could so easily be overlooked by a doctor who isn't immersed in the subject. Best wishes