My Son's Vancomycin Success Story

[VJC]

Tyler’s Journey

Two years ago today, my son started oral vancomycin for PSC (1500mg daily).
Today his liver function panel is NORMAL (ALP 88; AST 25; ALT34; GGT 25).
Today his MRCP (MRI liver/bile ducts) is UNREMARKABLE (no abnormal or significant findings).
Today his Fibroscan score (liver fibrosis/stiffness) is NORMAL.
Today his colonoscopy for Ulcerative Colitis is NORMAL.
Today his IgG4 is mildly elevated (111).

It has been a daunting journey.

Tyler was in his senior year of high school when he was diagnosed with UC/PSC just over 3 years ago. His labs at their worst were: ALP 461; AST 209; ALT 485; GGT: 437; IgG4 232. The initial MRCP showed: mild intrahepatic ductal stenosis; wall thickening; probable fibrosis; mild pruning and beading. A liver biopsy ruled out auto-immune hepatitis overlap. The initial colonoscopy showed acute and chronic colitis.

Tyler was put on mesalamine for UC, which helped. Tyler was not offered any kind of treatment for the PSC because there is none. He was being seen/monitored by a university medical center (transplant) team. When the pruritis was bad, he took low dose naltrexone (prescribed by an integrative medicine physician). Nothing was improving and his numbers were getting worse.

It was on this forum that I found Cynthia Buness, Patient and Research Advocate for Primary Sclerosing Cholangitis, who told me about her work with oral vancomycin and the story of her daughter’s success with oral vancomycin. I approached Tyler’s Hepatologist about allowing Tyler to try oral vancomycin and was met with complete resistance to the idea. Next, I met with Tyler’s Gastroenterologist who spent considerable time explaining that PSC is a slow-progressing disease and Tyler is in the “early stages” so he would not prescribe oral vancomycin, instead he wanted to take a “wait and see” approach. Both the Hepatologist and the Gastroenterologist are well-respected and good doctors, they just did not fit with our goals for Tyler.

Cynthia Buness connected me with Dr. James Tabibian, a renowned specialist in gastroenterology and hepatology. I was able to consult with Dr. Tabibian about Tyler and my desire to seek some type of treatment. Ultimately, Dr. Tabibian put me in touch with Dr. Kris Kowdley (Liver Institute Northwest, Seattle WA). My research revealed Dr. Kowdley to be internationally recognized as a clinician, educator and researcher in liver disease. When Dr. Kowdley took over Tyler’s care, it brought a sense of relief because he was willing to invest in Tyler. While familiar with oral vancomycin, Dr. Kowdley was not eager to implement its use at that time, but he did listen and left it on the table for later talks. Over the next 8 months, Dr. Kowdley utilized other treatment protocols but Tyler did not respond as he would have expected. Dr. Kowdley agreed to a trial of oral vancomycin which Tyler began on July 8, 2021. Two years later, my son is able to enjoy life and feels good thanks to Dr Kowdley.

The takeaway…don’t give up hope and continue to learn about the disease and your options, then find a physician who is a forward-thinker willing to work WITH you.

[Andreas]

Congratulations! It’s incredible how many people have similar stories (me included).

[VJC]

Thank you! I am happy to hear OV worked for you as well.
I wish more practitioners were open to trying it. Do you live in the US and how soon after diagnosis were you able to obtain OV? How long have you been on it? If this is too many questions, I apologize. I like to be able to share good outcomes when other ask about OV.

Vicki

[jace0221]

VJC- Great to hear. My son’s story was similar. Diagnosed with Crohn’s and PSC prior to starting his junior year in college (2016). He had no symptoms for PSC other than very high liver enzymes. His Crohn’s was not really problematic either, so his gastro took a wait and see attitude. I did my research, found this great website and learned about Vanco. I found a great transplant heptologist in NYC who agreed to put him on Vanco. Within 4 weeks, all his bloodtests normalized. He has never had ANY Crohn’s symptoms (in fact after his last colonoscopy the gastro said he can find no evidence of any Crohn’s). We travelled a pretty straight line until February 2022, when his liver enzymes went back up. This was about 3 weeks after he had received the 1st Covid booster. He was put on Prednisone and his bloodwork normalized immediately. But, they then stopped the Pred, his enzymes went back up and since then they have stayed up. Doctor thinks he has developed AIH and we are going through various immuno suppressors to try and find something that works. He still is symptom free. He had an MRI in January and there has been no advance in bile duct damage. Vanco has been a miracle in my mind.

[Joki]

I love hearing about Tyler’s success! It’s identical to my daughter’s tale. She was 19 and her liver biopsy showed she was in stage 3PSC and transitioning to cirrhosis where her liver would be unable to heal. I too found the wonderful Cynthia Buness and through this site, was lucky enough to connect with jace0221 who I see commented as well. I got the name of his son’s doctor in NY, Dr. Brett Fortune, who, after seeing many many doctors who wouldn’t, agreed to prescribe oral vanco (my daughter started and continues on 1,000mg of ANI brand vanco per day). After 5 weeks her once highly elevated blood levels were all normal, after another month, she got her period after almost 6 months absence (the liver filters hormones so it was a great sign that it was healing), and after a total of 7 months, a fibroscan showed that her liver had healed completely and was in the normal range! It’s been 5 years and so far, so good!!! The dark clouds have parted and it’s nothing but blue skies thanks to these support groups, Cynthia Buness, Dr. Fortune and of course, the miracle drug oral vancomycin!

[VJC]

So awesome to hear of other OV successes! I’m sorry the enzymes increased again. I’m sure you have already thought of this, but did you consider increasing the OV dosage? Lengthy discussions with Cynthia indicate each patient responds to OV differently and she knows of several that are taking 2200mg per day. I hope things get back under control soon. Thank you for your kind reply!

[jace0221]

Because my son’s liver enzymes responded to the Prednisone, that indicates AIH as the cause and not PSC. So, increasing the Vanco dosage would not be called for, as Vanco cannot deal with AIH. If we cannot get things back down with the immunosuppresents we will then need to go for a liver biopsy. The best way to determine AIH is with a biopsy. My son had a biopsy when this journey began and has been trying like h*ll to avoid another one.

[fcmmark]

Vicki,
So glad that Vancomycin has helped your son to this degree. I wish I had had this opportunity when I was fighting with my PSC, but thankfully I received a transplant 8 years ago this month. To add to this, even after transplant these last two years I have had complications with my bile ducts in regard to the anastomosis and my Roux-N-Y, both of which were redone in two separate open surgeries last year. I’ve been dealing with reflux from the small intestines pushing back up into the bile ducts and causing repeated infections and hospitalizations. I’ve been doing well these last 7 weeks while on continuous Cipro (ugh), but it’s kept me out of the hospital. I am having though now elevated Alk Phos levels which is an indication of inflammation in the bile ducts. I just started on 125 mg every 6 hours of Vanco last week and am hopeful it will get the levels back down to normal range again. I had done a similar treatment a couple of years ago and the Vanco did help. I’m hopeful that more hepatologists will be open to prescribing Vanco for their PSC patients. Take care.

Mark
PSC 2011 / Transplant 2015

[Andreas]

Hi Vicki! Thank you! I live in Sweden and in Europe it’s pretty much impossible to get vanco (unless you know a doctor personally). So I went to the Mayo Clinic 6 months after my diagnosis and got a prescription there. I’ve been on it for 5 years now and have had normal LFT’s and unchanged MRCP’s since (the damage I already had is still there, but it has not progressed).

[Flyingcoho]

Thank you for posting such encouraging stories. It’s so beautiful to hear good news, and I am so happy to learn about all these successful outcomes. Our doctors were not interested in prescribing vanco, especially since my son’s labs normalized with Urso. We are waiting on his latest lab results now. Here in Canada we are fortunate to have a doctor as many do not, so switching doctors is not an option. If the time comes where we need to push for vanco I will definitely be citing these success stories.

[VJC]

Thank you Mark! I hope vanco continues to help you:)

[VJC]

Thank you for sharing Andreas! It is good to hear people are experiencing good outcomes for so many years. I hope more doctors (in all countries) will consider vancomycin if appropriate.

[JeffDC1]

Great message, VJC. Thanks for sharing.
Jeff

[STLBluejay]

Thank you! We have a nearly identical story with my now 8 year old son diagnosed 3 years ago. He is on vanco and doing wonderful!

[maine]

Wanted to add yet another Vancomycin success story. My son was diagnosed with PSC and UC in 2017 at the age of 17 years old. A specialist at BC Children’s hospital agreed to prescribe Vancomycin and when he turned 19 years old his new specialist also agreed to prescribe. My son’s liver enzymes have remained within the normal range for the most part over the last 6 years and his fibroscan results show no damage. He has been able to complete a university degree over the last 5 years and is now looking for employment. Hopefully these numerous success stories can help to make Vancomycin a more accepted treatment option people with PSC .