Curious to your thoughts on this. Just had my semi-annual bloodwork and my bilirubin came back at a 12. My MRCP showed no blockages/tumors or increased stricturing from previous imagine(6 months)
Asked my doctor(transplant hepatologist) about having an ERCP or stent done to relieve itching(mostly mild with a few bad days) and jaundice(fairly extreme in eyes) but he was against it due to risk of infection and the potential for pancreatitis.
Would you seek a second opinion or trust your doctor who you’ve seen for the last 5 years? Aside from what I’ve mentioned I’m asymptotic.
Eric,
I’d ask for a second opinion. If you have a bilirubin of 12 and you are getting itching it’s a sure sign of a bile duct blockage. MRCP doesn’t always show those up clearly. Are you having any RUQ pain or lower right back pain as well? If your hepatologist specializes in PSC he should see that this is a problem that shouldn’t be ignored. Of course it’s an invasive procedure, of course it could cause pancreatitis, we all know that as PSC patients, but it’s a procedure that gives us a quality of life and keeps our liver going for a little longer until there’s no other option but transplant. I’d pursue getting another opinon.
No RUQ pain or lower back pain. I’ve sent a message to a doctor I saw last year at another hospital asking for her opinion, and have scheduled the soonest appointment(5/6) with another local hepatologist to get her thoughts as well.
Eric,
If your bilirubin stays up at 12 I don’t know how you are going to stand it to wait until May. I assume you are getting care through a hepatologist office that is connected with a transplant center? Maybe you could get a video appointment with the lady hepatologist before May and see if she will consider the ERCP. Do you know if you have any stents in there currently? If so, watch out for fever which is a sign of infection or cholangitis attack. If that occurs you need to get to an ER or call the oncall doctor with your hepatologist’s office.
I’ve sent the doctor I’m scheduled to see in May a message to see what she thinks.
There was another hepatologist I saw at the Cleveland Clinic last year who I emailed and she asked that I send her the radiology report, but believes an ERCP is reasonable. She’s 3.5 hours away so I’m hoping the doctor closer buy gets back to me sooner.
Bili at 12 will drive. you nuts. I hope you get that ERCP soon, and maybe another Hepa too. While there is something to be said for a conservative approach. Perhaps he did not appreciate your symptoms, which is a questionable sign. So maybe more communication?
It’s only been the last week or so when I’ve really noticed an increase in the itching.
I was able to talk to my current doctor today and we’re going to repeat labs a week from Monday to see where we’re at. It’ll have been a month since my last draw at that point and we’ll see how the bilirubin is trending.
I told him I felt he was dismissive of my request for the ERCP and that’s when he said that once you go down that road it’s something that usually has to be done more often and that’s what he’s trying to avoid. I respect the conservative approach as well, but I know my body pretty well and think it needs to be done.
The labs and MRCP were faxed to another hepa today and I’m waiting to say what her thoughts are. She’s at one of the top transplant hospitals in the country so her opinion will carry a lot of weight.
Good for you Eric. Glad you made some progress with this. Yes, it’s true that you may have to have more ERCP’s closer together, but PSC is a progressive disease and your quality of life while living with it is of great importance. Keep pressing on, live life to its fullest! One step at a time. We’ve walked down your road and there is a great life ahead!
Just wanted to chime in and say that my bilirubin increased to just over 3. (Itching was terrible for me). They ordered an ERCP and put a stent in a few weeks ago and it did help to normalize everything . I will need another repeat which was ordered at the same time. Good luck.
Sorry to hear you’re itching. It’s the worst. My doctor put me on rifampin. Was on it for 3 years and then for some reason the itching stopped. It may be of some relief for you. Stay strong.
Mine comes and goes. Honestly the worst was back 5 years before I was diagnosed(lfts were always high since 2004) but bili was normal then and no disease showed on MRCP or biopsy til 2019.
My son is taking a compounded prescription of Low Dose Naltexone (4.5mg) in the morning and it completely stops the itching. The only side effect was sleep disruption when he took it at night so he switched to a morning dose. His bilirubin is normal, but if he misses a day or two of the naltrexone, the itching starts and can be pretty severe. Just something to research and consider.
Update: had the ERCP today where they ballooned the main duct and put some stents in that will be removed next month. Aside from that he said all looked normal. Thank you all for your support and feedback.