Hello everyone, I had question about Vanco. I was taking it a few months ago, and it brought my liver enzymes down, but then they shot back up. During this time I discovered that my main bile duct was scarred over and was forced to have an ERCP done with placement of a 7cm plastic stent. I will be going to get another ERCP done next week with a Spyglass procedure in order to check the smaller ducts for cancer and possible additional stenting. My thought was that the Vanco was not working because of the blocked duct, but now that it's open I think it's worth a shot to try the treatment again.
My question is, does anyone know if there are any counterindications for Vanco and patients with stents? Also, can Vanco actually cause damage to the billiary tree? Before I started the treatment I didn't have any real problems, but then I ended up having all the symptoms of a blockage (Bili went up to 3.8 before the procedure, a few days after it went up to 7.0, then a week later down to 2.8, still have bili in my urine, having a blood test tomorrow to check levels, will update then) and I was admited to the hospital for it. While I can't find any information on Vanco and liver damage, I wanted to bring this up here to get feedback from others in my situation. I honestly believe Vanco will help, but I'm just scared to try anything right now.
Thanks for all you help ahead of time!
How long have you been on the vanco before you had these issues?
Low dose for about 2 months. I had an attack before I started as well, bili went up to 2.0 and I was in the hospital for a few hours for pancreatitis due to azathioprine. I was also taking medications for itch, doc had me try rifampin and naltrexone. I think those medications gave me an acute hepatotoxicity because when I stopped them (along with starting up Vanco) my liver enzymes dropped considerably.
There are no contraindications for Vanco and biliary stents. Vanco also shouldn't cause a blockage or otherwise affect the bile ducts directly through either oral or IV administration. I'd stay the course - the drug isn't causing these blockages and will in theory help to prevent these attacks from happening by stopping the PSC inflammation.
What brand and dose are you currently taking? How has your ALP moved in the last couple months? Has the Vanco helped with the itching or any other symptoms?
I was taking Prasco 125mg 4x day. ALP went as low as 221 but then started going up. I raised my dose to 500mg 3x day and then a few weeks later my hospital stay happened. Last blood test was on the 6th, ALP is 531, a life time record high. My other numbers got real high too but dropped, ALT 994-570, lowest was 218, AST 425-185, lowest was 94. As for symptoms, I've only had itch, and I'm not sure the Vanco did anything about it. Right now I have no itch at all (was all cut up and yellow when I was admitted, looks like the stent is really working).
I also had a small scare with my CA-19-9 which was high (50), but I researched that test and learned that it can be high with cholangitis attacks, and my doctor did not seem concerned because the number wasn't VERY high.
I personally think that the Vanco was working, because my numbers dropped considerably when I started it (I posted about it a few months ago in another discussion about stage 3 disease and vanco), but they went up again when the blockage happened. I'm going to start taking it again when I get home from work. 500mg 3x day for now. I'll keep you updated along with today's blood test results.
It sounds like you are on the right track. Hopefully the ERCPs will get rid of the major blockages and the Vanco will keep them from coming back. I hope you feel better - keep us updated!
Blood test results are in.
Bili is 2.4, ALP is 516, ALT is 735, AST is 337.
Bili went down but is still high. ALT went up from 570, and AST went up from 185.
The amount of frustration I'm feeling right now is incredible. Anyways, I'm going to start my Vanco later and I'll take another blood test after my next ERCP.
How long ago was the ERCP? Things can be real whacky post ERCP, so take that into consideration when looking at the numbers. The numbers may settle down after these ERCPS are said and done.
Random aside: I had a high (~1/1) ALT/ALP ratio and my hep spent a lot of time testing for AIH overlap (turned out to be negative). I think for most PSC patients ALT is typically significantly lower than ALP. Have you had antibodies tested or did anything show up in your biopsy suggesting AIH?
I hope all goes well next week with the next ERCP.
Hey jtb. The ERCP was done almost 3 weeks ago. That was my assumtion as well since my numbers were very low before I had it done and jumped up high afterwards.
When you say AIH, do you mean Autoimmune Hepatitis? I've heard my doctor mention that in the past. I'll need to bring it up with him again as well as speak to the transplant team when I see them for the first time next month. I did notice that I had a GGT test taken once a few months ago and if I remember correctly the number was around 650. Don't know if that means anything, I'll need to look into it. My next ERCP is on the 28th of this month, so we'll see what goes on. I'm going to take some cipro a few days before just to avoid an infection (ended up with one a few weeks ago with that last ERCP). I will keep you updated. I also have restarted the Vanco, taken 3 doses so far. Fingers crossed.
In case anyone is curious, I'm based in Orlando, Florida, and my specialist is Dr. Marlon Ilagan. The transplant team I'm going to is at Florida Hospital downtown Orlando, which is apparently a real good hospital. I'm going to update my medical insurance next year though and go up to Jacksonville Mayo Clinic. I want the best people checking me out. If anyone reading this lives nearby and would like to meet up and just chat, I'm totally up to that. I've never met anyone in person with PSC and honestly it would be nice to speak to someone in person who truly understands what I'm going through.
How long had you been off the Vanco? For me, my numbers started to shoot up after 5-6 weeks off of Vanco, but I'm sure it varies from person to person.
Yes, Autoimmune Hepatitis. My doctor was very concerned about this because of how high my ALT was in relation to my ALP. It looks like your numbers are similar. Any mention of interface hepatitis from your last biopsy?
GGT, like ALP, can indicate cholestasis. GGT is generally more sensitive than ALP, which can be good or bad. Any spike in GGT will show up for a long time as higher GGT in blood work; ALP is more of a current snapshot of cholestasis. For adults, any short term changes re: Vanco are probably better tracked via ALP vs GGT.
Are you a member of any of the Facebook PSC groups? Some are 2000+ members strong and there are regional subgroups for people looking to meet up with others in the same boat. I definitely recommend trying to meet with other local PSCers - it can be very therapeutic.
I believe I stopped taking it the same day I was admitted (24th June). I still think it was working until the bile duct closed on me. I'll be getting more blood tests to see if it works. Fingers crossed.
As for interface hepatitis, I'll need to take a look at my last 2 biopsies and I'll get back to you on that as well, but I do remember my doctor saying something about AIH and that it was treatable. I'll need to talk to them about this and see what they say.
Thank you for the info on the GGT. I notice it's not in any of my recent tests, I guess it's for that same reason.
I am signed up with the PSC partners group and used to post on there a few years ago but I haven't used Facebook in a very long time. I should try giving it a shot. I was also thinking about saving up to go to next year's conference.
Sorry for the delay, I haven't had the time to grab my results. I do however have a question that maybe you guys could help me with.
I notice that a lot of people on this site who have had stents placed have had them removed after a few weeks. My doctors however have told me that I will be getting mine replaced every 3-4 months from now on until I get a new liver. Any reason as to why is that?
Those performing ERCPs have many different opinions about this and the research isn't settled on what is best. Some doctors like to leave the stents in for a few months. Other doctors will remove the stent after a couple of weeks. Other doctors are anti stent and will balloon dilate only believing that stents encourage infection and that the ducts often remain open without them.
Here's an overview on the debate:
Okay, so I had my ERCP on Tuesday. The doctor removed the stent on the main bile duct and ballooned the left hepatic. The right one he didn't touch because it was in bad shape. He said the disease is pretty advanced and gave me about 3 years before I will need a new liver. I'm going to try a higher dose of vanco soon and I'm praying that will hold things off, because I'm still in pretty good shape right now aside from some liver soreness. I still have my first appointment with the Florida Hospital transplant team on the 18th or August to see what they tell me, but I'm pretty sure I'm still too healthy to get on the list. I hope I can soon though, 3 years isn't very long. I am taking it with a grain of salt however, because I've been told I'd need a new liver years ago by other doctors.
Next question. I've looked up some info on blood types but I can't seem to find anything solid. My blood type is O+. Does this work the same as receiving blood, I.E. I can't get a liver from a person with A, B, and AB blood types? Also, does anyone know if Mayo Clinic in Jacksonville FL performs living donor transplants? I already have friends jumping up to offer help, but I don't want to put anyone else at risk unless things get real bad.
As always, thanks for reading and for whatever feedback you can offer. I'm trying real hard to be as positive as possible here but this year has been pretty complicated. Communicating here, hearing fcmmark's recent transplant and knowing how well jtb is doing and anyone else here with a new liver makes me pretty happy though. It's going to be a tough road but I don't plan on giving up just yet.