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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Possible treatment?

I had an interesting discovery recently. I had a transplant April of 2018 because of PSC. We’ve been slowly reducing my medications as time goes on, with no signs of reoccurrence.

On April of 2019, we tried to go down to just one medication, and suddenly I had elevated liver enzymes… typical of PSC. My doctor immediately had me resume the last medication I stopped, and all was well within a week.

I saw in his notes after that he resumed the medication for “prevention of PSC reoccurrence.” My first thought - why didn’t we try that before transplant? He didn’t really have an answer.

The medication was Cellcept…500mg 2 x a day. That’s an immunosuppressant I thought only to prevent organ rejection. Now, no one knows for sure… but it’s thought that PSC was an autoimmune disease. So, slightly suppressing the the immune system with that alone, might have prevented further damage…and maybe I wouldn’t have gotten to the point where I needed a transplant!

Just my two cents… maybe something to share with your doctors.

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Our previous doctor was a fan of this medicine for treating autoimmune diseases but we didn’t go down that route as our diagnosis became bigger than just an auto-immune condition.

While this seems to be a good medicine when used appropriately during our research, any long term use can have significant side effects depending on how anyone responds to it. YMMV. Keep a close eye on labs and don’t brush off any potential side effects. I heard more than few cases where this can cause damage to the ileum upon long term use.

[https://www.mayoclinic.org/drugs-supplements/mycophenolate-mofetil-oral-route/side-effects/drg-20073191]
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5709631/]

Speaking of the ileum, I can attest to that! I was transplanted at the end of July, 2015. By November I was having GI issues so they ordered a colonoscopy. Turns out the ilium was damaged some. They took me off Cellcept and put me on MyFortic. They are both in the Mycophenalate class of medication but the MyFortic is more of a slow release form of it. I haven’t had that issue since then and it’s four years now!

Also, you mentioned that “It’s thought that PSC was an auto immune disease.” From all my experience with PSC and interactions with my transplant team, etc. PSC IS an autoimmune disease. Just wanted to clarify that.

Good luck on your continued new life with your transplant!

Mark

Wow! Like I said, we briefly tried to stop cellcept. Since we resumed it, I have had some GI issues. I have a colonoscopy pending…I’ll share this with my doctor. Ileum damage sounds like it might be a strong possibility.

Thanks guys!

Mark,

Realizing that you know much more about PSC than I ever will, I really have come to doubt that PSC is auto immune. To my knowledge, there are no effective treatments with immunosupression medications. Yet, Vanco has seems to be effective in many. As an antibiotic, wouldn’t that seem to indicate that PSC is bacterial? Specifically, that there is leaking from the gut?

Jace,
Your question is a difficult one to give a good answer to so I contacted the chief of hepatology at Duke who is a specialist in PSC to see what he had to say. He has been good enough to answer questions that arise on the forum from time to time that I need an expert opinion on. I hope this helps some.

Mark

HI Mr. Wilson

Honest answer is we do not know. We think there is an abnormality in the immune system that might be triggered by something (maybe an infection). But we don’t know. Research is ongoing.

I hope that helps

Andrew

While PSC throws many clues that it is autoimmune it also doesn’t fit the typical profile as we, among other factors, are a mostly male population and traditional drugs don’t work. The best guess, as Mark’s doctor indicated, is that PSC is probably autoimmune, but we still know too little about the disease to be sure.

Vancomycin actually works as an indirect immunomodulator. Bacteria in the gut influence our immune system and vancomycin, by eliminating most of these influencing bacteria, tends to inhibit certain pro-inflammatory aspects of the immune system.

Leaky gut, the translocation of bacteria or immune cells from somewhere downstream in the gut to the liver, has been a popular theory. The old thinking was that the biliary system was a sterile environment and that the bacteria we see on ERCP are a consequence of PSC leaky gut or cholestasis (or from prior ERCP). Recent studies show that the biliary system in fact has a robust microbiome even under normal conditions that mirrors and is likely populated by duodenum (where the bile ducts drain into the small intestine). This means that bacteria/yeast in the ducts are not a PSC quirk and that they aren’t necessarily getting there via leaky gut.

jtb, agree with your point of view. From the journal papers that I read, it seems that Vancomycin works as an indirect immunomodulator through a possible mechanism described in your post. Identifying which bacteria(s) triggers the on going proinflammatory response of the immune system, or what % of this bacteria (s) represents the ‘tipping point’, is the main challenge now. And indeed the biliary tract has a diverse microbiota under normal conditions.

Thank you very much jtb for your continuing efforts in reading and summarizing the findings of the available research.

Daniela