How often does your Doc want to do MRCP

Newly diagnosed. Stage 3 based on Firbroscan. My Doc at Georgetown U wants me to have a MRCP with elestography done every 6 months. Is that common? How often are MRCPs usually done?

Depending on the progression of your PSC, 6 months is certainly reasonable. I started out once a year then moved to 6 months and then some closer than that. A very valuable tool to keep an eye on your PSC. One suggestion, depending on what type of hospital system you are with, many of the cancer center MRI machines at least where I am at Duke are larger machines than the traditional MRI machines Much easier to deal with being in there for so long. I also find that having them turn the air flowing through the tube all the way up and keeping one arm down and one arm back I don’t feel like I’m in a casket. Good luck!

Mark
PSC 2011 / Liver Transplant 2015

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I was diagnosed in 2003 and I’ve had one MRCP. I don’t know the answer, but it definitely sounds like it depends on PSC severity and possibly facility.

I’m also a patient at Georgetown and do image screenings every six months. They are expensive and a pain in the butt, but they are important. Their main purpose is as a cholangiocarcinoma screening tool. We have something like 1% odds every year of developing cholangiocarcinoma. Though this doesn’t seem like much, we are all working to live long, full lives, making this a significant number of dice rolls. The only way to treat cholangiocarcinoma is to catch it early. If you are symptomatic, and these are often PSC-like symptoms, you are often too late.

I did MRCPs every six months for many years. After 8 years of being asymptomatic and with normal LFTs (treated with PO vanco), I’m now doing 1 MRCP and 1 ultrasound each year at six month intervals. I still have gnarly ducts from the previous 12 years of active PSC and nobody really knows what this means in terms of long-term cancer risk.

I had to do every 6 months as well for mrcp. I would go they would check the images for any blockages or strictures and then decide if they needed to do an ERCP or if I could hold off for 6 more months because it looked fine.

You have had PSC since 2003?? ?? I was just diagnosed in 2020. Early stage and I’m afraid that the “mean” age for survival (about 18 years) is with PSC…??

First of all welcome to the forum. I’ve enjoyed the conversations and it’s the first place I look for information now on a PSC topic.

2003 is correct. Scares me to think about. I just turned 40 last month, I have a wife of 16 years, 4 kids, and I can’t get life insurance because of that one statistic. 15-20 year survival rate isn’t comforting. My GI doc is a friend and he gave me the advice of just living like I will live a long normal life and die of something else ‘cause you really don’t know.

I track my liver enzymes and they go up each year. I had one trend down and it was when I started on a Vanderbilt study of Berberine. You might check it out. Berberine is an otc herb you can get online or any health food store.

Good luck with the new diagnosis. Hope you get good care and advice.

Ask your doctor about clinical research trails. I’m participating in one and (for better or worse) I get tested every few months, annual MRCP’s, and liver biopsies every 2 years --Paid for by the study, and I get paid for my time. Not saying that’s the route for everyone, but it has been beneficial for me to keep track of where I am and keep my medical costs at a minimum.

jtb -Have you explored clinical trials through the Georgetown docs? My Doc is Dr Satoskar. I have not not seen him once, but like him so far. I did get the sense that they were looking out for the CA, and also trying to see how it progresses in the first couple of years.

How do they do the “elastography” in the MRCP? It was explained to me as being like a Fibroscan, but done during the MRCP

Diagnosed 2002 with small duct (not sure if it makes a difference) stable since. Once a year @ University of Chicago.

I was diagnosed with early stage PSC and UC in April 2001 via ERCP. They did not use MRCP at that time. I always got a blood infection after an ERCP as did many other patients. I don’t recall when but I was switched to an MRCP every 18 months and blood work every 3 months. Also colonoscopy every 18 months. When the technology was developed I got a liver stiffness test with the MRCP. When I was in stage 3 PSC they switched me to an abdominal ultra sound and an ultrasound for stiffness. About 18 months ago I had bleeding from varices and some ascites. I got a TIPS procedure done by an interventional radiologist using a flora scope. This will prevent more varices and ascites from forming. I now get an ultrasound every 6 months to check the TIPS shunt. I get bloods drawn monthly. My doc is a hepatologist specializing in PSC so I think I’m getting the best monitoring based in evidence. I feel lucky to have survived 20 years. Every case is different so live life as best you can and love your liver.

Jennifer — Do you know why they switched from the MRCP to the Ultrasound when in Stage 3? I ask because according to the Fibroscan I am already in Stage 3 Fibrosis.

I’d be concerned with that myself. MRCP is much more accurate than Ultra Sound.

Mark

Lou,
PSC progresses at different rates in each patient. There is no set standard so don’t let all that bother you right now. The best thing you can do for yourself though is to make sure you are under the care of a transplant hepatologist. A hepatologist associated with a transplant center. Your local GI doc unless he’s also a hepatologist is not the best choice to manage your PSC. Then as things do progress he/she will be in the best position to get you on the list when and if that is needed. We do hope it’s a very long time before you might need a transplant but it’s good to be in the best hands if you do. I was diagnosed in 2011 at age 47. In January 2015 at age 51 my MELD score was 12 when I was put on the transplant list. By April it had climbed to 19. By the middle of July it was at 36. I was transplanted two days later. That was me so as I stated we are all different. We just need to be ready. This forum will be a big help to you in the meantime. We are here for you. I wish you the very best.
In the meantime though, live life to its fullest!

Mark

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I see Dr. Rangnekar and PA Keller who work closely with Dr. Satoskar. The team has been great and caught a number of issues, such as osteoporosis, that weren’t addressed by previous doctors. I went through the transplant listing process in 2014 and was their adult guinea pig for OV treatment. The treatment continues to be very successful and they reported my case at the ACG in 2015. I haven’t explored additional trials because I’m no longer having any PSC issues and I’m too normal to meet eligibility requirements.

I was diagnosed in 2001 and back then they gave us an average of 12 years before reaching an end point like transplant. Can confirm that MRI wasn’t so hot back then, so they defaulted to invasive procedures like ERCP and biopsy to see what was going on. Sure enough, I started to go south in 2013 with a dominant stricture they couldn’t poke open and got stuck in a loop of cholangitis infections. Those were dark times, but they put me on an experimental treatment and 8 years later I’ve never been healthier. I guess the point is that things are changing with the way this disease is approached and mean time to PSC end points is likely to continue to stretch outwards with increasing odds that these end points may be avoided entirely.