Just wanted to post this recent experience. I have had PSC for many years and had been basically symptom free. I have been on very high dose Urso 2 grams daily for several years. I recently started eating gluten free and had a significant enough improvement in my lab work that my physician decided to try lowering my dose. Within 3 months, I started to have problems with itching for the first time ever. I had my blood count rechecked and it had worsened dramatically. I am now back on the 2 grams Urso. I have read a lot of conflicting reports on the benefit of this drug for PSC. In my case it has certainly helped with my labs and symptoms for many years.
very interesting. I have been symptom free for 8 years and last march at my annual liver clinic visit they took me off ursodiolbecause of the conflicting reports, right now I am a little itchy but I had just put it down to the very cold weather, it will be interesting to see what my blood levels will be this march! (although I have just had my colon removed because of UC)
thanks or your comment
Hopefully it's just cold weather but it never hurts to see what is going on with your enzymes. I called in between appointments and had them checked. Hope everything is OK. This is not a one size fits all disease for sure. Carol