Thinning hair with PBC? Urso side effects?

[Stephanellie]

This is a random post and my first. After almost 3 years of symptoms, I was FINALLY diagnosed with PBC. I had been on Imuran because they thought it was autoimmune hepatitis, but my livers enzymes actually doubled while I was on it. I’ve also been on Prednisone for almost 5 months and am in the process of weaning off of it. I’m going to start Urso in November and I’m hoping my body responds to it. What are the side effects people have noticed? What can I expect? Will I get relief from fatigue or itching? Also, since I’ve been weaning off of the Prednisone, my hair is thinning out!! Ugh! Anyone else have this experience? I also have Limited Scleroderma (CREST). I have symptoms of all 5 letters, but suffer most from Raynaud’s and the esophageal issues. Would love to hear from anyone!!! Happy to be on here and be a part of a support group!

[teddybear7]

Hello I can't help with all your questions, but there's plenty that will do. As far as I'm concerned hair loss etc. I was told it was a symptom of PBC by my medics. You will see/ note that it's very rare that 2 people are the same. If you respond to urso your bloods should go down. But it won't help itching or fatigue. But there are other things to help the itch. As faras fatigue is concerned there is I'm afraid no easy answers. I find learning to pace my day & eating as little fat as possible helps. Oh I can't eat indian food anymore or drink alcohol it just knocks me for 6. Xx

[Stephanellie in reply to teddybear7]

THanks for the response!

[Ottley3]

On the hair -a bit off topic but I’m 49 but have fretted about my thinning hair since my 30s. I was taking a vitamin supplement to help hair growth - it worked wonders but now it’s thought it might have possibly triggered my pbc in the first place ....so upsetting. . I try to avoid blow drying my hair daily like I used to and I spend a small fortune on the “living proof” hair products and they have really helped. Back to your dx, I’m sorry you have PBC but it’s good to know. I’ve been on urso for 6 months and tolerated it well but the improvement in my enzymes has slowed to the dissatisfaction of my doctor and I’ll be adding ocaliva into the mix next week. I’m generally asymptomatic and feel good - much better than I did at time of diagnosis. coincidentally changed jobs right around the time of my diagnosis which greatly helped my work/life balance ..... exercise sleep and the right diet help. Hope this is helpful to you. Good luck

[Stephanellie]

Very helpful! Thank you! I’m happy to finally KNOW! I’ve been going crazy!