I have had multiple ercps after varying amounts of time from the first sympton that led up to each ercp.
One took two months, one took two weeks, and my most recent on, was one day, although I think I was fighting off some symptoms since early February.
So my question is for those who have had multiple ercps:
What has been the time frames you have found between the onset of symptoms and and an ERCP?
Jeff
Hi Jeff, Luckily, I haven’t had an ERCP for over 3 years. I went through a stretch after diagnosis of PSC in 2010 where I had about 5 or 6 within a 2 year span. My doctor does not like to perform an ERCP unless he feels that he has to. There are serious complications that can arise with the procedure, punctures, infection, and more…I think the time frame between symptoms and an ERCP would depend on how severe your symptoms are. By that I mean, how bad is the pain?, do you have fever?, are you jaundice?, what are the blood test numbers?..possible MRI to see of any new blockages…all of these would determine when and if it’s time for another ERCP…hope this is helpful…Dave
My husband has had 8 ERCP’s since November of 2016, a couple being only a week apart. The reason he’s had them is the doc does blood work a few days after each one and if his bili is still high (they can’t get it to stay down for longer than a week), they do another one. Two of the ERCP’s have also been for cholangitis attacks which I believe were about 3-4 days after symptoms started. He’s had a very bad run these past few months since being diagnosed. We were told this past Friday that his bili is 10.2 after just having an ERCP the previous week.
TLH,
Hello. That is a mighty high bilirubin your husband has. Have you run his MELD score lately? If it’s much over 15 I’d be asking to have him put on the transplant list. Things can change quickly with PSC. I went from a MELD 12 in January, 2015 / 19 in April / and shot up to 36 middle of July. Transplanted two days later. Not trying to scare you or anything, but I sure hope you have him under the care of a transplant hepatologist not just a GI. If not, please check into that soon.
Mark
PSC 2011 / Transplant 2015
Hi Mark,
I haven’t run it myself but the doc has. They tell us it isn’t high enough but they are extremely concerned because they can’t seem to keep his bilirubin and other LFT’s down. Most of his troubles are in the right and left hepatic ducts. They keep saying his common duct looks fine, which is strange to me. Unfortunately there are no hepatologists where we live and my husband goes through the VA so the closest transplant hospital is Houston. We are considering a move since I have family there, but were hoping to wait until he is ready to be listed. I’ve made my peace with the fact that he needs a transplant sooner rather than later, but am still quite frightened nonetheless. But seeing him miserable with non-stop itching and now a development of hyperhidrosis which in turn causes him to be cold often, makes me think transplant would be a Godsend. He’s also been on a picc line with antibiotics for six weeks, since his last 2-week hospital stay. Thanks for your response and advice- I appreciate it.
Hi TLH,
With my PSC the problems were also in the left and right hepatic ducts. The common bile duct is not as affected since it involves the pancreas drainage as well. I would really encourage you to make the extra effort to go to Houston and get him a consultation with the hepatologist there. Remember you are dealing with the VA, and unfortuantely all their problems are not fixed yet. I would encourage you to get a copy of his most recent labs and run his MELD score yourself. Here is the link to do so. I will keep you both in my prayers, but please this doesn’t need to wait much longer.
https://optn.transplant.hrsa.gov/resources/allocation-calculators/meld-calculator/
Mark
Thank you, Mark. From what info I have, he’s just barely at a 15, assuming his bilirubin hasn’t gone down since his last ERCP. His creatinine, sodium, and INR are all in good/normal range. He gets labs drawn tomorrow so we’ll see if anything has changed dramatically in the last week. We have an appointment with his doc on Friday and I’m going to insist on a consult with either Portland, Houston, or Pittsburgh VA hospitals. I know what you mean about the VA. When we were told his transplant would eventually be done at a VA hospital, my heart sank. But I’ve done research and their stats on transplants look good. Of course, that’s just my interpretation. In all honesty, I’ve read so much info about PSC, transplants, etc since he was diagnosed in November that it’s all starting to sound the same. Thank you for your prayers and congrats (is that the right word??) on your transplant in 2015!
Also- sorry, Jeff, for hijacking your original thread topic!
TLH, no worries! I’m glad your concerns are being addressed.
Jeff
Hey guys so I had no symptoms, other than high ALTS , ASTs and the other one that goes with that. I had an ERCP was in so much pain after, the stents had fallen - I had these removed.
I then had to go back in again because I got an infection from the ERCP and went in to septic shock. They put two stents in place.
I now am going to be going in for my forth ERCP because the stents the are causing me even more pain and I’m now experiencing itching which I never did before.
I’m so gutted because I was actually fine until the doctors started prodding around in there. I’m wondering about seeking legal counsel to ask on advice as I am unable to work and have been out of work , no income for 6 weeks.
Anyone any advice around my stent experience?
Thanks
Sarah
Sarah,
I hate that you are in this position. Is disability an option? If so, it seems like people are more successful when they have a lawyer assist them.
Thanks Jeff so I am going in for my 5th ERCP on Thursday hopefully this gives me some relief ! Currently on another course of antibiotics which does actually seem to be helping. I am lucky in that my partner makes enough money to support us both, and as I am a green card holder in the US I am unable to obtain disabilities. I just miss regular life as it was and I enjoyed working with my friends - it has spurred me on to look at other roles with less hours or less time on my feet. I do hope everyone else is ok and surviving ! This PSC can be a really tricky river to navigate