The 5-year-old daughter takes prednisone (5mg), urso and imuran on her PSC / AIH, which was confirmed by biopsy in September 2020. Immediately after starting treatment, all blood levels are normal. I’m happy, she’s doing well.
But now the question.
Does anyone know about Vanco treatment after standard prednisone + azatrioprine + urso treatment? because her blood has been fine for 8 months. What about a short vanco treatment? does anyone have experience with this please?
While there are certain cases where patients remain normalized long term after stopping vanco treatment, it is much more common that PSC symptoms and elevated liver function return within 1-2 months. Oral vanco as a treatment for PSC is typically taken long term. This isn’t to say there aren’t long-term benefits for short-term treatment, as it was found that the original Mayo vanco study participants were significantly less likely to reach end points compared to their peers years after stopping treatment.
There is an added challenge if LFTs are already normal when starting OV treatment. Usually the easiest read of potential efficacy are improvements/normalization of LFTs, though symptom and imaging improvements can also be tracked.
It is fantastic that the current treatment appears to be working. A potential conversation with your doctor is if an alternate treatment (vanco) could be as effective with less potential side effects. Weigh the known side effects of prednisone and azatrioprine vs. those of PO vancomycin. What are the risks of trialing PO vancomycin and slowly weaning down pred/aza?
Thanks for responding to my question.
it looks like her PSC / AIH was at the very beginning. biopsy showed no fibrosis / no liver damage. that’s why I think that her value was so fast later (14 days after the beginning of prednisone)
There was also an EBV infection + CMV virus, so it was all hard to tell. Colonoscopy showed mild redness, microscopic IBD. She never had MRCP, only liver biopsy and colonoscopy. She was positive for β-Anca antibodies.
However, I can’t shake the thought of Vanco when PSC turns out to be a problem with gut microbiotics. I’m from Europe and I don’t want vancomycin here. The doctor didn’t know it at all and laughed at me when I told him about Vanco. another meeting said he was looking at Vanco and said it was a possible solution. I’m very glad Vanco helped a lot of people. I also believe that 3 phases of nor-urso will turn out well and it will be another option.
I can give you my experience but it is different in many ways. PSC in children is very different than adults for one, I also had no other issues than PSC or any experience with the treatments you mention beyond URSO and Vanco .
When I had PSC the first time before transplant, the Doctor prescribed me Ursodiol and advised that the lowering of my LFT’s would be quite dramatic which it was. But in four years I was getting transplanted anyway with LFT’s high but not very high due to the URSO. My doctors give URSO for PSC because it is what the book says to do, and some other evidence of indirect statistical benefit has been stated to me, but a search on the literature does not put URSO (Ursodiol, not nor-urso which is different and of high promise) in as good a light as the LFT reduction implies. From what I see, although it had high expectations, decades of its use have indicated that it is not treating the PSC well. It is like taking Tylenol for brain cancer, the pain (LFT’s) goes down but the disease rages on.
On my second experience with PSC in my transplant, I was again prescribed by the book URSO which again dramatically dropped LFT’s. Doctors scoffed at suggestion of Vanco (all but one Dr anyway). I stopped URSO on my own accord after 3 weeks and – against Hepatologist advise - switched to Vanco and the LFT’s stayed normal, for years so far. My transplant specialists seem hesitant to acknowledge Vanco effectivity, but recently conceded I’d be best to stay on it.
Because of the latest learnings about URSO for PSC, I would advise to stay cautious even with the great results your daughter is getting – and as you are lucky enough to have a Doctor whose taken the time to do a Google search on Vanco and is interested, keep pushing for it. But very little is known about it really: can you go on and off it, especially if PSC is caught early? – they don’t know yet (and frankly they don’t even “know” if Vanco really works for PSC). But note there is a very tiny bit of data that suggests maybe it might not work as well on PSC the second time but that observation was in adults and more advanced disease. I went off it for two and a half years before rPSC came back - and LFTs normalized again within two months back on Vanco.
If you haven’t already, have a look at http://childrenspsc.org/ . Best of luck !!
Vanco has been successfully used for pediatric PSC/AIH, even in Europe in children whose parents are persistent. Vanco therapy is not short term though, as stated by jtb. Dr. Ken Cox (now retired from Stanford University) discovered this therapy for PSC in 1993 and has been successfully treating pediatric PSC patients since then. Many of his patients have been on vancomycin for years without disease progression. Only 1 or 2 have been able to stop vanco therapy altogether without return of symptoms, but we don’t know if the symptoms will return years later. If your child is responsive to vanco and you wean off prednisone/azathioprine, you can always reinitiate these if symptoms return. If they do not, you will know your child is responsive to vanco. jtb gave good information.
Both urso and vanco are prescribed “off label” however, there is no evidence that urso stops progression, whereas there is a lot of empirical evidence that vanco does stop progression if proper dose, stage, and brand. Glad you are now on vanco rjm.
Thank you very much for your reactions.
daughter is not on vanco yet, since October she has been taking prednisone + aza + urso after 14 days all its values were fine. Now I’m quitting prednisone and I want to talk to the doctor about Vanco. I don’t know if it will be for when all the blood is fine. of course I’m very happy. I think Vanco is truly a miracle for everyone who has saved and can live a normal life. you are a great band, you helped me a lot💓
I’m the late comer to the Vanco question. I have taken Vancomycin during my PSC treatment to control the disease and post-transplant to help control a c.diff infection. I am 75, so my reactions might not match a child, but I tolerate Vanco very well with no discernible side effects. Like any antibiotic, infections can become resistant to it. Xifaximin (Rifaximin) antibiotic was also given to me before and after transplantation. It is well-tolerated.
Pre-transplant, both were used to slow the damage to my liver while I waited for a transplant. Please note, my PSC was far advanced when it was diagnosed as Stage IV liver cirrhosis. I was asymptomatic until the very end, and then I developed advanced symptoms very, very quickly. I finally received a living donor liver transplant that saved my life.
Vanco is a life-saving medicine for me. I will be seeing and Inflammatory Bowel Disease (IBD) doctor next week to discuss a fecal microbiota transplant which will replace some of my c.diff infected stool with healthy stool from a donor. I’m having a hard time dealing with the “Yuck Factor” with the whole idea! I’m optimistic. Always have been. My adult daughter thinks I’m 75 going on 20 years old in my thinking, so I think that will help me if this therapy is needed.
Vanco has worked well for me, both pre and post transplant. It’s a Godsend and I hope it will help your child.
This is an incredible story! Thank you for sharing. I’ve been on vancomycin since I was 23 and it’s been a Godsend for me as well. So happy it’s been bringing you relief!
JenZ, how long have you been on Vanco?
I’ve been on it since January 2018. It’s returned my elevated liver enzymes to normal and stopped the progression of the disease. I’m so grateful for it!
Excellent! My 6-year old son has been on it since last summer and his levels are all normal or close to normal. I want to follow up with you at some point (and all others who have been on Vanco longer term). I want to build a database of long-term users to take that data to my son’s doctor. He has started planting the seed to taper or eliminate Vanco at some point in the future and we are adamantly opposed to that.
My daughter was also on imuran, urso and prednisone when she started taking vanco. She was eventually weened off of everything except vanco. That was about 11 years ago.