So I have PSC, Stage 2, diagnosed after a left hepatectomy done because ERCP brushings suggested cholangiocarcinoma (there wasn't any). I'm 61 and otherwise sort of healthy.
It seems that every 3 weeks or so I get fever, chills, afternoon- and evening sweats, which subside with a 5-day course of levaquin.
How are others being told to manage their episodes of cholangitis?
Hi Tashaleo, hope you're feeling better. When I have a flare up I treat it with Cipro for at least 5 days. I also take Urso twice a day and Delzicol for colitis daily. I am also stage 2, been there for 4 years.I have been flare up free for almost 2 years. It's a very strange disease...Good luck...DaveCJ
I too hope you are feeling better. My daughter has PSC, but she is only 7. They treat her with Urso and when things are not going so well they use to add steroids and the immune suppressant. At the moment she is on both on a "low" dosage. When things have flared up they increase the steroids substantially. I do not know what stage she is because they have never disclosed that, but I will ask at her next appointment.
Thank you kindly, both of you.
Hello Dave, just reading over your older post about your flareups. My husband is currently hospitalized with one such flareup. It is his second stent in three weeks time . Wondering if you also have stents, and already prone to frequent infections? If he could medicate himself with the drugs you mentioned will be a lot better than running to the hospital an hour and a half away each time. Also they think the solution is to change the stents, although they never have shown any signs of The origin of infection. Any feedback would be greatly appreciated!
Hello, I hope your husband is starting to feel better. PSC is such an unpredictable disease, you never know when a flareup is going to happen. My understanding about bile duct stents is that they have to be removed after about 3 months.They’re not permanent like in other parts of the body because of infection. Over the first 2 years after my diagnosis in 2010 I had about 3 stents. Then I had an ERCP with a balloon procedure which has seemed to really help open the bile ducts. I do still have a flareup from time to time but because of the Urso and Cipro I have been able to stay out of the hospital. If your husband is not using these two medications he should definitely talk to his doctor about that possibility. Please keep me informed as to how he’s doing…Good luck…Dave
Thanks jaydakylie. Glad to hear it was successful. His narrowing came in fast, in 6 mos time, they put two different stents in, now both have caused infections…never had infection before they did ERCP. His GI said her smallest balloon wouldn’t fit up main duct which is 2mm. (Anyone know someone whose got a smaller one?) just worried that we reached end of what this team can do for him.
Thanks a lot Dave! Are you on Cipro and Urso as needed? Or daily? Also have read a lot about Urso here…seems like a split opinion. Last week he was hospitalized for 6 days, given broad spectrum of antibiotics. Replace stent, with longer one into previously blocked area, his LFT numbers dropped, but as soon as take home antibiotics ended infection returned and we are back in hospital. Maybe no stent is way to go for him. They took yours out after balloon?
Hi. I take 300mg of the Urso twice a day. That is considered a low dose.I know there have been conflicting studies with the Urso, but I feel like it is better than not doing anything. I have been taking it since my diagnosis in 2010. I take 500mg. of Cipro twice a day when I start to get the pain in my upper right stomach, just under the rib cage. I take it for 5-7 days. I have been getting about 2 flareups a year and I really think the Urso and Cipro has kept me out of the hospital. I think the balloon procedure of opening up the bile ducts during the ERCP that I had back in 2012 has helped not to need anymore stents for now because you can’t keep them in too long in that area. When was your husband diagnosed? Has he had many flareups? Does he take any supplements? Is he a coffee drinker? the last might sound like a strange question, but in some new studies coffee has been found to help liver disease…I try to have 3 cups a day…hope some of this information might be some help for you. PSC can be a very frustrating disease among other things…Good Luck…Dave
Keep in mind with ERCP, that if they can’t get through a certain duct with the balloon dilation one time, sometimes after a few weeks or month they can go back in and try again. Hopefully you are using the same doctor each time to do the ERCP’s. Keeping it with one doctor lowers your risk of complications because they are already familiar with your husbands ducts and know what to expect. I truly believe whenever possible, if they will avoid placing stents and dilate the ducts instead that the chances for infection are greatly reduced. The stents are just asking for an infection especially in advanced PSC.
Regarding the URSO, I found it quite helpful in keeping the bile thinned which gave me longer times between ERCP’s. I was on 1200 mg a day. An yes by all means ask his hepatologist for a Rx for Cipro with refills and keep a filled bottle on hand at all times. It’s good to get it started as soon as possible when infection sets in. Good luck.
Mark as always, your reply has a trove of valuable info…can’t thank you enough!
Thanks Dave. He does still drink coffee. Cut out gluten too. Right now they have given him such a broad spectrum of antibiotics. He may go home in two days with a pick. First Transplant meeting in : days. I will ask about Urso and Cipro for the interim period. Very nerve wracking—wondering about future infections. Getting 2nd opinion to see if we can do balloons. Thanks for the very helpful information Dave!!
Did you get the ERCP from a hepatologist ?
Yep totally agree with all of what Mark said.
I live in New Zealand so I think our health system is very different to the US. We don’t get the same choice of providers that you do
I’m under my gastro who I’ve seen for years with my UC but the ERCP is not done by her is the liver team I think
First time I got cholongitis I had an ERCP with stent then had it removed 6weeks later but ended up with cholongitis again 6 months later. On another occasion I had 2 successive ERCPs 1 month apart just balloon dialation which was successful for 14 months.
I’ve just today ended back in the hospital with cholongitis and having ERCP tomorrow
Are there supplements you would recommend?
The hepatologist you go with who is connected with a transplant hospital will schedule the ERCP with a doctor on his team. The doctor will be a gastro but he will be an advanced endoscopic. ERCP’s are very invasive and need to be done by a specialist that does these every day of the week just about not just occasionally. I’d also recommend using the same doctor each time to perform them. They will get very familiar with your bile ducts which is a good thing.
Good luck, smooth recovery!!
Always well said Mark.
I echo this. Sunday I came down w a blockage and sepsis within 2 hours of first symptom. Had a fever of 40.8 degrees Celsius (105.5f) by the time I hit the ER - 3 hours from first feeling off. ER staff wanted to do an ERCP, and we’re offended at notion we wait til morning when the head transplant surgeon who normally does them for me. I was in no shape to argue, actually couldn’t mutter my name at this point, but my family drew the line. Had the blockage ballooned and the whole biliary tree sprayed out the next morning before lunch my the expert doctor.
Spent 4 days inside on iV antibiotics. Home now with oral pills.
This was the first time in 15 years of medical issues where I felt that doctors weren’t on the same page and I was forced to disagree and argue between departments.
In the condition you were in you could have very well had an emergency episode with an inexperienced ERCP doctor that didn’t know your insides and ended up in open surgery to keep you from bleeding to death. So glad your family knew what to do and drew the line. Glad you are doing better now!