Well, after feeling good (liver-wise) for about 6 months, I’m having URQ pain again. This feels stronger than when I had my 1st Cholangitis attack and before my gallbladder came out last Fall/Winter. I sent an email to my GI letting her know. No fever, so I wasn’t sure what she’d want to do (tests?) because all we’ve discussed was if I had pain and fever. My liver enzymes were good in August when my primary ran a bunch of labs and I was diagnosed with fibromyalgia. It stinks, because this week is the first week since August that I haven’t been in pain all over my body, and now PSC wants to rear it’s ugly head! Anything I should know/ask/request at this point? Thanks for any info/advice and for listening to my mini-rant.
I think the first step is to get a full set of LFT labs and see how your bilirubin and other liver numbers are doing. If your bilirubin is over 4 or 5 there may be a blockage that needs clearing by ERCP. URQ pain and elevated bilirubin were always indicators to be that intervention was needed. I do hope you are seeing a hepatologist for your PSC not just an ordinary GI. This will be most critical as the disease advances. Take care.
Hi Mark. Yes, I am seeing a hepatologist twice a year right now. I really like him and his staff as they are able to answer any concerns I have right away. My GI doc went to school with my hepatologist, so they know each other and have a good working relationship. I think I’m lucky to have found them (it was purely chance that I chose each of them and then found out that they know each other). I just got an email from my GI and she wants to see me next week, so I guess as long as I don’t develop fever we’ll go from there. Thanks!
Oh, another question…I’m on Urso. Will my lfts still reflect any blockage? I’ve read some things about Urso and I’m confused about the way it affects your numbers?
My labs came back normal. Would the Urso cause them to be normal if there was inflammation in my liver? I’m really confused by all this. I think my doc thinks I’m crazy. She says I shouldn’t have pain unless there’s inflammation. They have me scheduled for an ultrasound on Tuesday, but I don’t want to spend money on a needless test. What will an ultrasound show if my labs are normal? My gallbladder was removed last December.
Hi again. Urso does thin the bile to allow better flow of the bile through the beaded ducts which in turn will cause the numbers to normalize early in the disease. In later progression this is not as much of a drastic drop as in the early stages. I’m no doctor but in my experience, they never did an ultrasound to check my liver. Liver condition and checking bile ducts was always done with MRCP w/ and w/out contrast. Unless they can give you a compelling reason why you need an ultrasound, it sounds like a waste of money to me. They may be just trying to do it to show that they are doing something. I do hope you are in the care of a transplant hepatologist and not your local GI doctor. Best wishes.
I am “early in the disease” according to last year’s MRCP’s. I thought the ultrasound was a strange idea too and yes, I thought they are trying to appease me. I sent my doc a note last night asking if I really needed it if my numbers are normal? I thought the idea was to catch a problem with my ducts before it actually created a blockage and infection, but now I feel like that’s not what is happening. I voiced this to the PA at my visit this week. I am seeing a GI. My hepatologist has told me that the GI manages most of the problems I have at this point, but he is my transplant doc and I see him twice a year to follow up. He and his staff are very good at answering questions I have though. Do you think maybe I should get a message to him and let him know what’s going on and that the other doc wants to do an ultrasound? I know he’s the expert. I just thought the chain of command was to go to my GI first. That’s what the GI doc told me.
If it were me I’d ask the hepatologist if he would manage all your care and that you don’t feel comfortable letting the GI do it. I never once saw a GI. Always my hepatologist. PSC is too complicated to trust with anyone else.
Ok. I will. Thanks, Mark. I did go ahead and run this by him via email this morning too. I keep thinking that he told me at the last visit to get off the Urso, but I was taking some other things too and I have gotten confused about our conversation. I had told the GI that he said that and she asked why and I hadn’t asked him why, so I’ve just kept taking it. Now I’m really second guessing myself.
I personally would not discontinue URSO. It’s your only defense to keep bile flow going other than ERCP. I took 1200 mg a day from diagnosis to transplant.
Thank you for the advice. My hepatologist replied that he thinks the ultrasound will be low yield. I’m just going to cancel it and move on. I can deal with the pain for the most part, I just thought we were being “proactive”.