hello,
I’m starting to get many answers. But still have a little more to do. Diagnosed in past year with sjorgrens and pbc. I’ve been on urso 10 months. Neurology referral pending. Has urso affected anyone’s muscles with cramping, weakness or spasms? Mine may have been a bit worse but hard to tell. Comes in waves. Just trying to sort it out. Thanks in advance.
Hi Artsy I was diagnosed a little over a year ago. I get muscle pain in my thigh, cafe and shoulder that I did not have before. I don’t know if it’s from PBC or Urso or something else. I was curious about your symptoms of Sjogrens. Last august I developed a terrible taste in my mouth. It’s there most of the time some worse than others. I do have really dry mouth at night. Do you have this terrible taste or what were your symptoms. Were you given a test to check for this? Thank you.
Hi Samanthaan,
When I was being investigated for my liver I did a lot of research. I had been feeling different for 6 or so years previous, little things that came in waves, dryness,weakness, and word recall issues. When PBC was considered and the GI specialist did immune testing my Ana was very elevated. He said PBC didn’t explain all my symptoms and PBC was still being considered amongst other things. I pushed hard for a referral to rheumatology. The rheumatologist confirmed the PBC diagnosis, and said that although the labs can be positive in both conditions, would I do a lip biopsy as I felt I needed to know whether I had sjorgrens as well. The biopsy showed chronic inflammation I think, not definitive for sjorgrens. She said there may still be a component of sjorgrens though. I asked if muscle symptoms could be related to anything I have going on and she said I would need a referral to a neurologist and to see my family doctor to discuss. After I got home my consult note from rheumatology said I was diagnosed with sjorgrens. This was just a few weeks ago. I have a referral to neurology. The family doc is asking in the referral to neuro if muscle symptoms are related to sjorgrens or other ….. time will tell.
so in had mild varying symptoms initially for past 6 years include dry eyes, mouth, fatigue, decrease exercise tolerance, less ability to fight off illness, muscle spasms, itchiness, muscle pain, hoarse voice, tongue just starting with cracks, all of which intensified extremely in the past year and half since I had COVID. Sorry for the long winded reply ….since getting sjorgrens diagnosis I was able to get pilocarpine and eye drops. Both help. It was worth finding out for me, and sounds like there are things worth investigating for yourself as well.
I have experienced muscle pain, it comes and goes. Sometimes lasts a few weeks. I also have dry eyes, skin, and mouth. Don’t have sjorgens yet, been tested multiple times. Have pbc 3 years. On urso 750 per day. I have had hundreds of labs. See rheumatologist and hepatolgist every 6 months. Hang in there - sometimes it just rots, and I have to adjust my attitude -
Sounds like you are definitely being proactive in taking care of yourself and finding out about any 'new' diagnosis. Sjogrens is one of the mos common other auto immune diseases that people with PBC have along with osteoporosis. Those with Sjogrens may benefit by a support group. smartpatients.com/sjogrens
I have a lot of cramping in my toes and legs. But, I had it decades ago as well, only in more recent time, it is more persistent. So, it's hard to tell what's causing it.
thanks for your input everyone
hi, I had a lot of pain in the lower back, hips/joint area an either bones/muscles on the outer side of my thighs. Just a few days before my three month mark on Urso, this week, the aches stopped. I wonder if it is just an adjustment period to the medication, as I didn’t have it before I started…
Muscle pain, and cramps, are relatively common in PBC. It has always been assumed to be PBC as opposed to Urso.
Robert, Tylenol (Paracetemol?) does little for it. Is there anything else over the counter?
sometimes taking Magnesium may help as it a smooth muscle relaxer. Check with your doctor to get his approval.
Just trying wet heat maybe?
Are you on other autoimmune meds? Hydroxychloriquine causes major muscle cramping in me. Cramping started to fade as soon as I stopped it and eventually have stopped. Hydroxychloriquine has a long half life.
hi , no other meds other than urso and pilocarpine. Meds make it tricky to manage doesn’t it? Was the plaquenil for other autoimmune?
Urso
Unable to take Urso for PBC
To take or not to take Urso!!!!
Urso and rapid weight gain
