The more I read about this disease, the more desperate I get. It seems like there’s no good outcome from this at all. It’s a bomb waiting to go off. My son was started on vancomycin a month ago, how long will this keep him from progressing to a liver transplant ? Do you guys know of stories from children on vancomycin?
It is great you have started Vancomycin already.
Since you have it, I assume you must be familiar with the success stories, such as these from Stanford
This forum has also several Vanco users who have stabilized (in some cases even reversed) their (or their children) PSC effects. Read all the Vanco posts in this forum.
There seems to be high chance that Vanco is enough to stop PSC progression even if it is not a cure as such. New treatments (such as norUDCA etc) are being trialed all the time.
I also spoke with some Stanford doctors recently and they said that the results from the latest Vanco trial are indeed good (in a sense “too good”, as nobody wants to stop their Vanco treatment and join full-scale clinical trial because of the danger of getting placebo instead of real Vanco).
The progression will generally happen over time. This disease is not one that you can write down steps like A-B-C. Every patient is different in how they progress, the severity of symptoms, etc. I really encourage you to just let your son live as normal a life as possible. It doesn’t help to worry or worry him about it. I say this respectfully so please don’t be alarmed. The key to PSC is to just keep educating yourself to the disease, let your son eat what he wants and desires to eat, drink whatever as long as it’s not alcohol. Stay away from these cures you will hear of like liver cleansing diets, etc. They are all hogwash. I’m not sure about outcomes, progression, etc. with Vancomycin as I didn’t use that. Things like Vanco and URSO help give a quality of life to the PSC patient, perhaps delay progression, but they are not a cure. I would love to hear of Vanco curing PSC if possible at some point, but right now I know of no cures to the disease. Make sure he gets 6 month checkups, an MRCP probably once a year or with a child they may do it further out, labs, etc., and just let him be a young man living life and not worried over the disease. It will let him know when he needs intervention, rest, etc. I wish you and your son well in the coming year.
Ted, Really, the results have been “too good”? This is incredibly good news.
Do you have any idea what form of Vancomycin they are using in the trial? Cutis or Ani or some other other?
The comment about “too good” was my own. Stanford people simply said the results were very promising and they have even been considering full-fledged FDA-compliant clinical trial (this would also enable insurance coverage for Vanco) but nobody wants to join such blind trial…so clearly the patients themselves believe Vanco is superior and they have seen their own results e.g. lab results and visible effects).
My recollection about Vanco brands in Stanford trial is that they are using various brands (partly because patients have to buy those themselves). Stanford has been aware of differences between the brands for long time, so that has been one focus of the research. I think this forum has many members who are participating this current trial or otherwise actively using Vanco based on Stanford/dr Cox recommendations.
I have not started Vanco use myself yet (my labs are still ok).
I have posted about my son’s results since he started Cutis Vanco (liquid form) on October 8th. His 6th week blood test results showed tremendous reduction in liver enzymes (I have posted the specifics somewhere in the forum). But, my son has never had any of the PSC symptoms, just the high enzymes. He did, last year, have a liver biopsy and MRI and both showed some PSC damage.
There is no reason for anyone to believe that Vanco is a cure. But, there is enough evidence that it can stop disease progression, possibly reverse damage, in SOME people. There are people on this site who tried Vanco and did not get the results others have had.
That said, beyond cost, why would you not try it? If it doesn’t work (after trying for 6 months), you can stop. But, enough people have had positive results that, IMO, there is no reason why you shouldn’t try it.
Are you having any PSC symptoms?
Dear Jace, I AM trying it. Waiting on my doc calling in my prescription.
And yes, many symptoms, feel awful most all of the time…
It sure would be great to have this information!
To your question: I can report my daughter is on Vanco since 2012. So far so good with some ups and downs along the way while trying to lower the dosage.
Hi Grose, I just saw you’re post and was wondering if you could share your Vanco reduction story. My 20 yo daughter has been on 1000mg a day for about 10 months and it’s been a miracle a miracle. But how low do most vanco patients go to maintain? I’ve heard rare cases that once you go too low they need 3 times the amount to stabilizer. Any words of wisdom? Thanks!
Hello, Joki - here’s my vanco reduction experience. After two years on the treatment with complete normalization I started to slowly reduce dosage. I’d lower dose about 250mg/day then give it about three months to see if there was any movement in LFTs/symptoms before lowering again. I started at 1500mg/day and ended up at 500mg/day. Everything has been great over the last 3 years at my present dose and I haven’t tried a lower one.
If you are interested in doing this I recommend checking in with Dr. Cox who has the most experience. I believe he has his patients wait at least a year at normal LFTs before attempting dose reduction.
This is not without risk. There are isolated cases where patients have attempted dose reduction or treatment cessation and who were not able to get treatment to work again after resuming previous treatment. I wouldn’t say that this is common.
Thanks for sharing your reducing story. My daughter started, and continues on 1000mg a day, but her doctor wants to start reducing (shes only been on for 10 months but her blood work is now normal and her liver, which was on brink of cirrhosis, is now totally normal!!). I think its too early and I too heard the stories of reducing too much and then needing like 3000mg a day to maintain. I did talk to Dr. Cox and he admits that it’s unusual to have to go so high on vanco to play catch up, but that it does happen. We are all in such a good place and don’t want to chance anything, but unfortunately we are at the mercy of the doctors that write the prescriptions. Hopefully my daughter can convince him to continue her on 1000 a day. Thanks again for your input. I really appreciat it!
Where is Dr. Cox?
Dr. Kenneth Cox is a pediatric gastro/hep in Palo Alto, California. He has been treating his patients with oral vancomycin since the mid-90s and is a great source of information, even for adults.
Hi Susan, I would strongly suggest getting ANI brand vanco (if you’re not doing the liquid). It has the best results (something about how the capsule dissolves in the system where it needs to go). We special order it from Walgreens and it takes an extra day. Some people get it at CVS but our local stores don’t carry it.
Thanks Joki, I’ve been taking ANI for the past six months or so.I just began to chew them and am hoping that makes a difference.
Best of care,
Hi Joki- sorry for the late response: It is true that our experience with lowering was not good. Our baseline was 1500 per day, oral (powder mixed with water as no pills in Israel…), tried to lower 3 times, at 500 step size (perhaps that was the problem…). Currently on 2500 after last attempt backfired. Also please keep in mind my girl has UC (untreated otherwise) currently in full remission. Just our experience…
My blood work is looking better on Vancomycin 500 three times a day and chewing ANI. I went down from 1,000 three times a day to 500 3x. As no doctors are advising me, I am now considering going down to 250 mg three times a day or even lower (125 mg?). I am especially motivated by the Cox et al. study that came out last summer showing LOVER doses are more effective than higher doses and knowing the higher doses didn’t work for me. What do others feel about this? GGTP has gone from 119 to 86 in the past two months. ASL and ALT are normal. Alkaline P went from 164 to 159. Not much but a bit lower. I’ve been on Vancomycin now for over a year. I’m not willing to stop since my diagnosis and my symptoms of UC are much improved clinically. My theory-dream-prayer is it WILL work but just take much longer to click in after almost thirty years since being diagnosed with PSC.
Thanks much everyone,
How long have you been on the lower dose? If 1500 mg/day seems to be working, I would be hesitant to change anything.