I think the primary factor is that pediatrics tend to get diagnosed at an earlier stage of PSC compared with adults. OV treatment success appears to have an inverse relation with PSC progression and I think this is why we see better outcomes with kids.
Anecdotally, age does seem to play a factor in reversing existing damage. There are more accounts of improvements in imaging for the younger set.
For one data point, I started treatment at 31 and it is still working 10+ years later. My extrahepatic ducts normalized on imaging while my intrahepatic ducts have remained stable (no improvement or progression).
I really think success is based on progression at the time you start Vanco. If you start it early enough, it is more likely to be successful, regardless of age.
Concur with others, I’m sure that growing children are more adept to physiological adjustments like better/faster healing and so on, and that is a factor - but I am convinced from all the experiences I have read that response to vanco is simply improved if its started at less advanced and entrenched stage of disease. I am rPSC therefore about as nacent to start Vanco as just about anyone ever. I literally started it within 6 months of the first LFT elevations with pruritus reinitiation, and incidently no MRCP or biopsey evidence (yet) due to that nacence - and it worked immediately and I was over 50. Age is not the factor, its advancement state of the disease.
I had high LFTs and was diagnosed 12 years before starting OV treatment (at 19). When I started treatment I was going through the transplant listing process due to recurring cholangitis, likely caused by extrahepatic strictures that couldn’t be dilated by ERCP. My MELD was 15. Notably, I did not have any cirrhosis.
I’m glad to see this hearty discussion about the use of Vancomycin in treatment of PSC. When I was coming along pre-transplant, I didn’t hear much talk about the use of it. But I can attest post-transplant now 8+ years that it has helped me with some inflammation issues in my bile ducts. I had to have my anastomosis as well as my Roux-n-Y redone last year due to bile duct complications. I’ve been on Vanco since and it has helped much in controlling the inflammation. Unfortunately, I’m having to stay on Cipro 500 twice a day as I’m getting reflux back up my bile ducts through the Roux-n-Y and have had multiple hospitalizations. Things are stable now almost 3 months. I’m on 125 mg of Vanco 4 times a day.
I was diagnosed about 10 years ago (late thirties) but did not have any symptoms or elevated LFTs.
10 years went fine, and then during the last year, my LFTs jumped super high (ALP 800 etc), then started to very slowly decrease (ALP down to 280) before starting to increase again (to 500).
Maybe Covid or Covid vaccine triggered something or maybe it was just bound to happen…
I started Vancomycin 6 weeks ago. ALP and GGT went down 35-40% (in 5 weeks) and ulcerative colitis state is improved. ALP is still 290, but it seems that at least the initial phase had an effect. But I was hoping for a bigger decrease.
I’m using vancomycin pills 500 mg three times a day (1500mg daily, orient pharma brand). I open the capsule.
It takes much longer for the Alkaline Phosphatase to come down than all the other liver numbers. Mine is still a bit high from a bile duct infection I had last month. You should start seeing that number go down more if all goes well.
Hi Ted! Sorry to hear about the progression! I wouldn’t count out vanco on such a short time frame. ALP and GGT dont change rapidly (ALP has a half-life of 1 week, and GGT even longer), so even if a drug works, it takes some time for these markers to normalize. There might also be an issue with the capsules (which have been discussed in various threads). Also, look at all LFT’s and not just at ALP. (If e.g. all LFT’s are normal but ALP is increased, that would suggest the issue is could be coming from outside the liver/bile ducts.)
I was diagnosed 6 years ago (at age 20), and have been using vanco since (without any progression and with normal LFT’s). I was only at stage 0 (i.e. no damage to the liver) and only had intrahepatic-PSC (i.e. only damage to the small bile ducts inside my liver, not outside), but it still took 2 months for LFT’s to normalize (from around 3-5x reference range). As it has been mentioned in this thread, I think that disease stage is crucial for vanco to work (as it’s not a cure). The people that I’ve heard tried vanco without any luck unfortunatly have been in later stages of the disease. This is not shocking either, as older people generally would be in a later stage of the disease than younger people.
My name is Freddy I had a transplant in 2017 at the age of 32. I was ok liver wise for 2-3 years but had horrible colitis issues and lost a lot of weight. Then this past year as my colitis issue cleared up with Remicade infusions. Bile ducts began to close and I turned yellow and had stints put in. Had about 4 stint exchanges felt awful. The only times I felt good during these years colitis wise was on Vanco. Finally at my last visit in May with my doctor they said we’re not doing any more stints and my PSC had returned I thought doom day was coming again. Then my GI doctor said words I have been waiting for. She said you might be right in regards to vancomycin and you can stay on it permanently for colitis. Not knowing it would drop all my liver numbers back to normal range in a month as well. I am currently taking 125 mg 3 times a day hoping this vancomycin train will continue to run and be a cure and or treatment for PSC!!!
Freddy,
Thank you for sharing your experience and how Vancomycin is helping control what appears to be rPSC now. This is encouraging to hear especially for an adult patient. I am convinced that the Vanco controls the inflammation in the bile ducts. I’m still on it 125 mg 4 times a day due to some issues with reflux from the GI tract through my Roux-n-Y. I hope you continue to get good results from this course of treatment.
You are correct. But there are also multiple variables that affect response: dose, age, stage, presence of IBD, concomitant drug, duration, and bioavailability. Happy to share information on any or all of these for those of you are are interested.
I was diagnosed with PSC in 2010. I’m a very young in shape 67 year old. All my liver numbers are perfectly normal but MRI shows bile duct strictures…My PSC seems to be progressing slowly. I take 300mg. Ursodial twice a day and Balsalaside 750mg 2 capsules 3 times a day…Why do you think that my liver specialist is reluctant to prescribe Vanco ? It seems as though it is helping a lot of people…and can help repair the bile ducts…Thanks…Dave
Cactusgirl: do you have any insight if Vancomycin alone is preferred for UC-PSC patients?
I’m using now Vancomycin, and mesalamine (Lialda) for (mild) Ulcerative Colitis. But I started to think that maybe vancomycin takes care of UC as well and Lialda might impact Vancomycin.
So maybe Vancomycin alone is safer. I’m already opening Vancomycin pill to improve absorption.
Hi Ted! Vancomycin doesn’t interact with mesalamine (Lialda), so this isn’t an issue. I would be careful with changing IBD medications. The main purpose of using vancomycin is to treat PSC, as the outcome of PSC is quite bad and there are no approved treatment (which makes it quite an easy decision to try vancomycin). For IBD, there are many proven treatments available and the outcome is quite good (most people can live a normal life with it, without any bad outcomes). Also, PSC doesn’t correlate with IBD (i.e. you could have late stage PSC and mild IBD or vice versa).
on the question “Why do you think that my liver specialist is reluctant to prescribe Vanco ?” the answer to that is bizarrely long. There are ‘our’ theories (which I think are fact) that you can review on a search on this site of many of the posters’ names from this thread (who are experiential experts). Its a bit of a profit thing for pharma, a professional (and therefore livelihood/reputation) risk thing for physicians, a nobody cares cuz we’re ‘Orpans’ thing (i.e. Orphan drug), absence of time or ability to integrate the available science and information (lack of desktop research skills), and lack of guts. I’m 59 on vanco for 9 years for rPSC, not naive (I have my own science publications) - and I can testifiy the stuff works. And I will not go through the suffering again.
Ted,
That’s great news. So glad you are seeing your numbers come down. Those AST and ALT numbers look great for a PSC patient. Even the ALP numbers look good. Keep up the good work!
2 months ago I got sick (maybe some viral infection or food poisoning) and my LFTs spiked (ALP up to 210) but I think now I’m back on track.
Other LFTs:
AST=42
AST=66
GGT=203
My Vancomycin brand varies (no-name generic). My pharmacy can get Lupin brand, but I haven’t seen it mentioned here often.
