So this question goes out to the people who have PSC & Chrons and have been on Vanco. My daughter did one round of Stelara but is coming off of it because she has to get a vaccine for school. But her GI doctor wants her back on later. Her hepatologist is willing to start her on Vanco. Do you need both? Does Vanco help alleviate symptoms of Chrons? She is also on Urso for about 2 months but he wants to give it 6 before deciding to keep her on it. So many meds…just want to do what’s absolutley necessary.
Thank you! Your experiences on this site are my go to!
Hi,
My personal opinion…biologic therapy actually is NOT beneficial for people with PSC.
My son was diagnosed with with ulcerative colitis at 3 years old.
I 100% new it was allergy related and his GI insisted it was not.
It’s a long story, but he was diagnosed with crohns at 13 and I was told he had to go on remicade.
I wish I walked away then!
He actually was having a cholangitis attack and the remicade just blocked in the infection!!!
His body couldn’t do what it needed to do to heal. Our bodies know what to do, if given the chance.
He was so so so sick and the doctor didn’t believe me! It was a complete nightmare!
It destroyed his liver!
Obviously, we left that doctor and he was diagnosed with PSC (I just recently found out was in his chart at 4. We were NEVER told)
He has
done amazing on vancomycin…NO SIGNS OF COLITIS OR CROHNS!!!
Feel free to message me!!!
Parents need to stick together!
Within our children is the cause and cure for this horrific disease!
My son was diagnosed with PSC and Crohn’s in 2016 when he was 21 y/o. We may not be a good comparison because he had no symptoms of either, beyond elevated liver enzymes (discovered during a routine physical). We went on Vanco 6 months after diagnosis and his blood tests normalized within 2 months. He has had absolutely no symptoms for either disease, so i truly believe Vanco is playing a major role in his stability.
My son was diagnosed with UC-PSC in spring of 2020 (he had just turned 18). Although biologics were offered as tx for his UC by his GI specialist, we opted not to take that path. He started mesalamine and some supplements and his UC did improve. His initial Hepatologist had nothing to offer and was not willing to think outside the box. We found a new Hepatologist who is a pioneer in research and a forward thinker and who is willing to venture into other options for the sake of his patient. Three months ago, my son started 1500mg daily of Vancomycin. His ALP, AST & ALT are all normal (and have been for 2 months). His UC has been better with very few issues. My son also has elevated IgG4 associated with his PSC and that too has decreased significantly on the Vancomycin.
As a parent it is so hard deciding a course of action when so little is really know about these diseases. Educating yourself as much as you can will give you knowledge to help make the best decisions. I am very glad we were given the opportunity to try Vancomycin. In order to know if the Vancomycin could be effective, we tried to keep a constant by not adding meds or removing them while we gave the Vancomycin a 6 month trial. We wanted the Vancomycin to be the variable we chose to focus on.
Keep us posted and get in touch if you have further questions. There are some 2019 videos on YouTube of Dr. Cox speaking on Vancomycin that may be of interest.
My son has UC and PSC. He tried a lot of biologics, Remicade, Xeljanz, Entyvio, Stelara. They were not effective for him at all. He lost 20 lbs. with Stelara and thankfully we got an appointment with Johns Hopkins and they recommended Vancomycin. In three weeks, he has already gained back 10 lbs. and is having the best quality of life. It took 5 years to get to a GI who wasn’t just going through the motions of prescribing the latest and greatest biologic. Vancomycin is working on his UC better than any biologic. His liver enzymes have been pretty normal since his PSC diagnosis but it will probably help with that also.
Oh my word to not have been told! Thank you for your reply. It is so difficult, this journey. I want to trust what doctors say and what they want to prescribe but at the same time I worry because I know they are not as invested in her health as I am. My gut tells me no to biologics…right now at least. She was just diagnosed at 18 only a few months ago. She was completely asymptomatic at that point. Now she only has “issues” when she is super stressed. I am just curious if the Vanco will help with the crohns…She wants to trust what the doctors say and do but so few have experience with PSC. Thanks so much for your input!
My daughter was the same! Zero symptoms (except itching) and then the labs led us to this ultimately
So who prescribed Vanco for him? GI or hepatlogist? And did they give you any idea of how long someone can actually be on this medication? Like you, our kids are so young and we don’t know the longterm effects. Thanks so much for taking the time to reply!!
Thank you! I was lucky to find a hepatologist at Jefferson who listens and also willing to prescribe Vanco…haven’t gone there yet though. He wanted to try Urso first. I am hesitant to put her back on the Stelara when I hear that Vanco helped with IBD also. I have read up on Dr Cox and all their studies. And doing a ton of other research also. Looks like it’s getting closer to approve vanco but just not there yet.
How is vanco given? Is it just a pill or is it that powder they have to mix?
We found a hepatologist in NYC who prescribed the Vanco. My son can’t take pills, so he get liquid form (already mixed) from a great pharmacy in NYC who Fed Ex’s it to the house every 2 weeks. Oral vanco doesn’t get in the bloodstream, so in theory he can take it as long as necessary. 1500mg (500mgx3 per day).
Not covered by insurance so we pay about $500/month.
I urge you to get on it right away. Unlike Urso, it seems to stop progression and allow the liver to repair, in the cases where it is effective. of course, it isn’t effective for everyone, but the sooner you try, the better.
Vancomycin comes in both capsule and liquid. My son is taking ANI brand capsules that are 250mg each (500mg AM, midday and PM). We follow this dosage protocol because it is already in use by Stanford University. There has been some data to suggest that the brand of Vanco may play a role in its effect. We sought ANI brand based upon that data. Additionally, some have suggested that removing the top half (blue end) of the capsule provides better bioavailability and so we also follow that line of thinking.
It is such a sad and difficult journey.
I believe Vanco has helped my son tremendously.
He has a colonoscopy in a few weeks, so I can tell you beyond a shadow of a doubt then.
It can’t hurt to try! I have my theory on what causes this horrible disease.
Biologics can be very dangerous if they are not needed, my son was covered from head to toe with blisters and oozing sores from remicade.
He was so incredibly sick.
If you want support and someone to talk to…feel free to call me.
I am a good listener. Us parents need to support each other as we go against big pharma and find the cause and cure!!!
There must be a common thread within all of our children! XO
Both. The GI recommended the Vancomycin. The Hepatologist was going to put my son on Urso but decided not to since he was starting the Vancomycin. No explanation but he did run some blood tests so he has a baseline. His liver enzymes are normal and he was diagnosed with PSC last Thanksgiving. He has had UC since the end of 2015. At that time they did not detect PSC. This is the first time in years that he has had normal bowel movements. The Vanco has been pretty amazing at least for the first four weeks that he has been on it.
So happy to hear all of these great experiences with Vanco for their children. My 6 year old has done tremendously since last year when he was diagnosed with PSC-IBD.
Hi! Many people in the PSC community seem to do well on vanco without a biologic. In fact, researchers believe that it’s better to put PSC patients on vanco BEFORE putting them on a biologic since, for many people, vanco helps both PSC and Crohn’s/ulcerative colitis.
I have both PSC and ulcerative colitis. I did amazing on just vanco (no biologics) for a few months until I was accidentally given the wrong brand of vanco. When that happened, I flared and couldn’t get my flare under control with just vanco, even after I went back on the correct brand. I then started Entyvio, and to this day, I’m on both Entyvio and vancomycin. It’s the longest remission I’ve ever been in! For me, I needed this combination therapy.
Talk with your daughter’s GI about trying vanco for a 3-month period and see how she feels. She might not need Stelara! I hope vanco brings her to remission for a long, long time!
Who is your son’s doc at Johns Hopkins. I am a PSC advocate and I keep a master list of doctors who prescribe so I can refer patients. PM me if you prefer. Thanks.
Lots of great answers and information here about oral Vancomycin (OV). I am happy to email you a trove of published papers on oral vancomycin if you would like. I recommend considering OV prior to starting a biologic. PM me if you are interested.
Hope all of you and your loved ones are doing well. I have a girlfriend who is diagnosed with UC and PSC. She has been on Stelara for almost two years and doing quite well. Her UC is in remission with minor hiccups from time to time and she has been pretty stable. Once she was diagnosed with PSC last year, I found out about oral vancomycin therapy on this forum as well as many others and decided to be proactive and get her started on it right away before she started to suffer from her liver getting damaged and scarred.
We spent 3-4 months finding the right doctor to prescribe the medicine. As she is from Norway and we live in Canada, we tried many different doctors and hospitals in both countries until we found a doctor at Cornell in NY, who was supportive of the therapy and kind enough to prescribe the medicine.
Last week when we went to NY from Montreal to pick up the medicine, we found out that the pharmacy only had 17 days of supplies (around 140 pills) based on a dosage of 1000 mg a day and they were asking $3400 for them. I wasn’t sure whether there was a mistake as I read some other people’s experiences here about their costs being $500 a month.
Before reaching out to her doctor, I wanted to ask you guys to see what type, form, and brand of oral vancomycin you are taking and what the cost is like on a monthly basis. Given that we are not from the US and not insured there, I expected the cost to be high but not $6-7K a month. I’m not sure if having US insurance is even helpful since this is an off-label therapy but I would really appreciate it if some of you could chime in and guide us in the right direction.
All the best to each and every one of you dealing with this difficult disease. Thanks in advance.
