I know some of you have already read the comments on the FB page. The subject of taking Urso, even though it causes so many side effects and ‘doesn’t keep me from dying’, has been brought up. I feel in my heart I need to offer my thoughts.
I have been taking Urso for over 35 years. I had PBC for 20 years while experiencing itching, extreme fatigue, ascites, edema, 9 liver biopsies, numerous scopes, jaundice, and ultimately a liver transplant some 19 years ago. But during those 20 years I lived my life as best I could. I worked as a nurse, traveled, had a daughter graduate from college, and hoped I was able to always be there for my family and friends when they needed me. Was I miserable some days… for years it seemed before the transplant.. You bet, I was - just as many of you are! But I know that if I had not been taking Urso I would not have had those 20 years.
We all will face death…… but I also firmly believe that some people die a little each day by just not embracing life and all it offers us - despite the itching, fatigue, joint pain, dental problems, ascites, and whatever else this awful disease called PBC has to throw at us. We all should be thankful each and every day for a medication that slows the progress of this incurable disease. There are many diseases that have no cure, no medications at all that can help. We all choose how we live our lives - whether we have a chronic disease or not. Is PBC scary? It surely is! We did nothing to cause this to happen yet here we are stuck with it. We make choices about how we live. Some of our members question our taking Urso - my question is then where any of us would be without it. If someone doesn’t want to take it, that is a personal choice. If I have offended anyone, that wasn’t my intention. Urso surely does have side effects for many of us. Like someone said, though, we have to weigh the pros and the cons. We owe it to ourselves to do whatever we can to slow the progress of PBC and give our livers and bile ducts the best chance for functioning to their fullest. Urso has been the proven first line of treatment for many years and has added years to our lives - that would not have happened otherwise, I assure you.