I caught part of Dr. Jones' Q&A today from The PBC Foundation. One of the best suggestions from him has to do with what/how to ask questions of your doctor.
He said be very specific with your questions. i.e. " Am I a responder to Urso?" "Am I a non responder?" Don't just reply 'yes' when he asks if you are taking your Urso.
He said that if you ask very specific questions, then the doctor can't just glaze over an answer as they often do. He has to answer your very direct question.
I wonder how often we go to the doctor's office and have no specific questions to ask? If you do have a question, please try to be as detailed as you can with it. Don't let them get away with just a 'pat' answer.
What direct questions could you ask next time you see them?
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DonnaBoll
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yes…it is good to have an agenda at your appointments. I jot down my thoughts and then we (hepatologist & I) talk about them at my appointment. I pull out the piece of paper and show him.
sounds like you are prepared - good for you! We have to advocate for ourselves. Dr. Jones' point about making the doctor answer a specific question and then expecting a specific answer was such a good reminder to all of us.
I totally agree. Being proactive includes being present and engaged when we see our doctors. I hope we have come to the realization that doctors are no Gods... we have a responsibility to ask why? to sometimes even disagree..... we have to be informed patients about our disease.
Ask what a responder is. Is it just that your numbers are better or that you feel better. My numbers went to normal AND I felt better ad to fatigue almost within days. So I would say I am definitely a responder. And my numbers have stayed in normal range. My only remaining issue is periodic horrible itch which Urso does not address. I am going to ask about Sertraline as it seems to help others on this forum. One of the reasons this forum is valuable
Good idea for a question to ask... very specific for sure. Sertrline does help many people who I know. I do know that when some doctors are asked what they can prescribe for the itch, some say there isn't anything. Don't ever take that as an answer. That is so wrong. This is when it is imperative that we know what possible options are out there for the itch. I have posted before a list of what members have used - and what not to do as well. I will try to post again. Glad your numbers are good and you feel good!
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Very negative Newspaper article abou PBC and AIH
ALT and AST
Ocaliva cost??
sorry for being dense but can you explain
side effects from Urso
