Anyone using Vanco w/stage 3? Or, anyone know of promising results for stage 3'ers?
Thanks!
Lilly
Lilly Anne,
I am between stage 2 and 3 and it help me. I was part of the clinical trials at Stanford and my alk started at 920 and when i finished the trial (3 months later) it was at 400. Now 2 months since i finished its 230. I am still on btw. It takes longer for people with more advanced stages to decrease levels. People with advanced disease might have to be on a maintenance dose long term though.
J
Hi LillyAnne- I am a little confused about the staging numbers. My son was diagnosed at 17 with PSC and stage 3 fibrosis. I don't know if that's the same stage 3 you are asking about. He went on vanco about a month after diagnosis, and has now been on it for two years (along with immunesuppression for AIH). He's now on just vanco, as of about two months ago. His fibroscans are reading totally normal and his blood work is all good. Every once in a while, his liver numbers go up just a little over normal, but nothing like at diagnosis. His only symptoms are occasional vomiting and some fatigue, but I suspect this was mostly due to side effects of the other meds and hope to see this as a thing of that past!
Good luck. IMHO, the downsides to trying a three month course are very low.
Jk1978, I was under the impression that the protocol for treatment of PSC with vanco is indefinite maintenance dose, with dose levels varying by individual response, but potentially as low as 250mg 1x day. There seems to be evidence that the PSC returns when the vanco stops.
I asked that question when i first went in and she told me that some are doing good a year or more after they finished the vanco. The study started as 2 years then they kept dropping it until its only 3 months now so i dont know how long the ones that got a break from vanco were on. She did say the further along with your disease you are the more likely you are to have to stay on and the ones that were able to go off where the ones in the early stages. It will come back but if they can give your body a break they prefer that as their main concern was that it hammers you kidneys and vancomycin resistant enterococci.
That's interesting, and the first I heard of it. Who is "She?"
Thanks!
Dr Shah, she is leading the adult trails at Stanford.
I know that the Dr. Cox group have documented success with cycling Vanco treatments, but was not aware that there have been cases where patients have been able to stay off the drug long term. The trial results promise to be very interesting.
I was in contact with Dr. Cox about a year ago and at that time there had been no cases with side effects. The beauty of Oral Vancomycin is that it is not systemic so the fear of kidney damage confuses me. Yes, it is a possibility, but there have been few documented cases where Vanco has permeated the gut to the level where it would cause any issues.
My own personal experience: no cirrhosis, but serious strictures that could not be resolved with ERCP. I was on Vanco for 4 months then stopped. At the 30 day mark my numbers still hadn't gone up. At 45 days I was in the hospital with a cholangitis attack, numbers through the roof. I went back on Vanco and life returned to normal. It was a very expensive and painful experiment I'm not about to repeat anytime soon.
I made an account and wanted to chime in here for two reasons. First, some background. I was diagnosed with PSC/UC when I was 17 back in 2001. I've been living with constant high enzymes and no real symptoms until the last two years. I started to get itching which has kept me up at night. Recently my enzymes shot up real high (AST 335, ALT 654, ALK 273, Bili 2.0) and a liver biopsy in feb that brought me to stage 3 (bile duct loss seen in 7 out of 10 portal areas stained). I started to restrict my diet more than usual and started juicing daily (2 apples, 2 carrots, 1 beet). It seems that that started to help, since a few weeks ago I had a blood test done which brought some of the enzymes down, but the ALK went up (AST 209, ALT 403, ALK 349 Bili 1.3).
I started doing research on the new treatments and discovered about Vanco. I found this site and read JTB's information. With that and Dr. Cox's study, I decided that I would do a small trial of my own. I was able to start treatment with 125mg 4x daily with the Prasco generic with my doctor's blessing, and I'm going to take blood tests every 2 weeks to see what happens. After my first two weeks of treatment my enzymes have dropped considerably (AST 106, ALT 218, ALK 248, Bili 0.8). Aside from a little itch which is very managable (about a 1.5 in the scale of 1-10), I have no problems with the medicine besides having to wake up at night to take a dose. I will keep on updating you guys to let you know how things are going.
So my first reason for posting is to let you know that so far a stage 3 patient seems to be having an excellent reaction to this treatment. Obviously this is very early but I will keep you updated.
The second reason is to extend a heartfelt thank you to JTB for all of his information. You are the one who made me make the jump. Thank you man.
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Nomad2040, thanks for the information and I hope you continue to do well. I would also like to extend a big thank you to JTB. Your posts helped me make my decision to pursue the trial at Stanford.
Becky
Nomad2040 said:
I made an account and wanted to chime in here for two reasons. First, some background. I was diagnosed with PSC/UC when I was 17 back in 2001. I've been living with constant high enzymes and no real symptoms until the last two years. I started to get itching which has kept me up at night. Recently my enzymes shot up real high (AST 335, ALT 654, ALK 273, Bili 2.0) and a liver biopsy in feb that brought me to stage 3 (bile duct loss seen in 7 out of 10 portal areas stained). I started to restrict my diet more than usual and started juicing daily (2 apples, 2 carrots, 1 beet). It seems that that started to help, since a few weeks ago I had a blood test done which brought some of the enzymes down, but the ALK went up (AST 209, ALT 403, ALK 349 Bili 1.3).
I started doing research on the new treatments and discovered about Vanco. I found this site and read JTB's information. With that and Dr. Cox's study, I decided that I would do a small trial of my own. I was able to start treatment with 125mg 4x daily with the Prasco generic with my doctor's blessing, and I'm going to take blood tests every 2 weeks to see what happens. After my first two weeks of treatment my enzymes have dropped considerably (AST 106, ALT 218, ALK 248, Bili 0.8). Aside from a little itch which is very managable (about a 1.5 in the scale of 1-10), I have no problems with the medicine besides having to wake up at night to take a dose. I will keep on updating you guys to let you know how things are going.
So my first reason for posting is to let you know that so far a stage 3 patient seems to be having an excellent reaction to this treatment. Obviously this is very early but I will keep you updated.
The second reason is to extend a heartfelt thank you to JTB for all of his information. You are the one who made me make the jump. Thank you man.
Great info here.
If you take vanco 4x daily, do you have to wake up during the night to take it?
I would have assumed it is enough to take it eg 3 times a day, or eg 6.30am, 11.30am, 4.30pm, 10pm.
Is it that important to take it at certain intervals?
Thanks for the kind words Nomad and Crewmom. If it wasn't for this site and older Vanco posts, I wouldn't have known about the treatment, so a big thank you to everyone who has taken the time to share their experiences. I have learned a ton from everyone's posts. A minor detail may not seem important to share, but it may make all the difference for someone else.
Nomad - I'm so glad you starting to beat the itch. If you don't normalize LFTs after a couple of months, try to up the dose to see what happens. I take 750mg a day and consider it low dose.
Ted: I decided to follow how the trial is going to the letter. I'm assuming that the medication is passed through the body and not as active after the 6 hour window is up, but don't quote me on this because my knowledge on the phamacology of the drug is limited. Once I finish the 3 months and graph my blood test results, depending on if I reach my own personal endpoint (complete normalization of LFTs), I'll start to experiment a bit. I will keep you updated on everything that happens. Right now I have my cell phone set to go off at 9am, 3pm, 9pm, 3am, which is fine since I usually wake up around 2-3am anyway to use the restroom. Also, my work schedule has me sleeping from 11-7, so I feel most comfortable waking up right in the middle. I keep the medication nearby with a bottle of water and I'm used to walking around in the dark so I don't bother turning on a light, which helps me get back to sleep.
JTB: Appreciate the info. I've already done research on it and I can get the powder as well. I plan on doing just what you say, rising the dose depending on my reaction to it until I follow your exact dose.
I'll add some more info as well, since as JTB says, every detail matters. I'm currently on a low dose Urso regimen (600mg morning and 600mg evening), and was on a very high dose (2400mg/day) for a few years until my doctor and I read the trial about high dose urso being bad. I had no problems when I was on the higher dose and don't notice any difference on the lower dose. I'm also on 10mg of prednisone, which in my opinion isn't doing anything besides raising my blood pressure, cholesterol, and making it harder than usual to loose my excess weight. I'm planning on getting off of it if the vanco really works. I'm also taking Prevacid for GERD. I was on Azathioprine but I had a major reaction to it so we stopped. I've also had major itching reactions to Rifampin, which I find funny since it is designed for itching. I'm restricting gluten, meat, and starch from my diet, and am juicing daily (2 carrots, 1 apple, 1 beet).
That's all I can think of now, I'll add more as I remember it. I would like to say though that doing your own research is key to beating this disease. Don't let your doctor be the sole person in control of your health. While they are indeed the professional here, it doesn't hurt to learn everything you can on the side. I discovered and educated my doctors on both Urso and Vanco, and I'm tracking the Nor-Urso and fecal translplant trials VERY closely. I'm positive that we will beat this mean s.o.b. soon.
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Interesting. Stanford vanco trial seems to have 500 mg given orally 3 times a day (based on clinical trial website).
That sounds easier schedule to manage.
https://www.clinicaltrials.gov/ct2/show/NCT01085760?term=NCT01085760&rank=1
This is the trial I'm following. Let me know what results you get from that regimen. Depending on your results, I might try that in the future to see if it works on me as well.
She said the most concern about vre is if you have a nick or cut such as during a scope, etc.
looking back thru my wifes notes she took our first meeting it says “vanco for 1 year then stop. Then will restart when liver enzymese increase.” So it does say when not if. A theory that was thrown around that could be a cause could be back wash from the intestines. Thought that was interesting.
Nomad,
Im now after the study taking 250 mg 3 times daily not 4 times. My alkaline levels dropped from 920 to 400 on 500 mg over 3 months and from 400 to 230 since i started on 250mg 2 months ago.
I've done both 4xday (6 hours) and 3xday (8 hours) and I've had the same positive results with both. When I was on 4xday, I wasn't strict with the schedule. I usually did 8am, 2pm, 7pm, 12am.
Nomad: That is earlier phase 1 trial.
Currently they have (final) phase 3 trial. Dosage is different. I intend to follow that vanco trial (I assume it includes all the lessons learned from phase 1 and phase 2 trials).