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My experience with FMT (and my intro & vlogs)


#1

So grateful for this forum. With so little research anecdotal experience becomes invaluable and so here is my experience with FMT, fecal microbiota transplant.

I triggered PSC in 2016 as a third autoimmune component, since then my liver is constantly worsening at a rate of 0.1 kPA per month (fibroscan), my MRCP shows mild PSC, my liver biochem markers (alt, ast, bili, alp, album) have been normal for a long time. I am symptomatic mainly with RUQ.

0.1 kPA per month I consider fast progressing.

I have done FMT using 6-7 different donors, mostly through enema infusions and capsules. What I have learnt WITH MY N=1 experminatation, perhaps this will help someone else going further:

  • FMT is safe. I either benefited or it didn’t impact me. Top down (capsules) and bottom up.
  • ALP was normalized by FMT, this is also reported by Dr. Allegretti in half of participants.
  • This normalization of ALP is not necessarily of clinical significance, I had no improvement in symptoms or liver stiffness.
  • Some donors work much better than others. One donor who stopped my symptoms for some time.
  • Fresh FMT is 10x or even infinitely more effective than using frozen samples. I expect some microbes I am missing do not survive the freezing.
  • Top down is more effective than bottom up. I believe I am also missing bacteria in the small intestine.
  • Overall I am not satisfied with my current results. It is a very impractical therapy. I will try my best donor for 2 mths ca, if I am still not happy I will change approach vancomycin.

Have a nice day everyone, thank you for all your contributions.
Davide


#2

Are you Davide from Europe?


#3

yes, I am swiss, I live in Switzerland and Spain. I triggered PSC while in Reno, NV.


#4

Are you Davide from “Davide’s Quest…”?


#5

I remember you had tried Vancomycin. Bummed to read FT have not healed you. I’m heading into my seventh month on VO. Switched from CutisPharma to ANI three months ago. Liver enzymes remain elevated as they’ve been all these decades since I was diagnosed (never took Urso), but stools are normal for the first time in fifty years and liver itch is gone. I’m going to ask the doctor to keep prescribing.


#6

Hi Susan, great to hear you are observing positive changes. I hope you’ll observe more and more. Hugs.


#7

Davide,
Have you any studies on the effectiveness of low verses high dose Vancomycin — and timing — on people who’ve had PSC for many years? It seems like all the studies are three months and if the liver enzymes don’t drop to normal in those months then the VO is determined to not be helping and the patient is stopped. Logic would imply much longer times to see changes for patients in more advanced stages, don’t you think? I’m trying to figure out whether to ask my doctor to raise or lower the dose (500 3td) although want to stay on it for a year maybe two even though my insurance barely covers the exorbitant cost of ANI.


#8

Thank you for sharing your story, Davide. I have heard so much about FMT, but never from anyone who has really tried it. So many people think it will be their miracle cure. I’m sorry it hasn’t helped you.


#9

Susan, how long did it take for UC to improve on Vanco?


#10

My clinical symptoms improved VASTLY immediately, with a few days. Poop once a day. Formed stools for the first time in decades. No flatulence. A colonoscopy three months into VO though showed the same colon inflammation, all same UC stuff happening and the low grade dysplasia as it had six months earlier and all colonoscopies years previously. Im hoping the wall of the colon healing takes longer than symptoms.


#11

Susan, thanks for sharing the details. My son 34 year old has PSC and UC is really struggling with UC and is on high doses of Prednisone for a long time. His bones are thinning and sugar is going up. Right now he is on 30 mg and has been on 15-20 mg per day for more than two years. His PSC is doing ok since he is on high prednisone. His alk phos is around 1.5 times the normal while AST and ALT fluctuate. when he was not on prednisone his alk phos went up to 800. He is at the verge of having colectomy since UC is not getting under control with taking colazal, 100 mg Imuran, Biologic Stelara and 30 mg prednisone. His hep is not willing to prescribe vanco yet. How do we get a prescription of vanco, we are willing to pay if insurance doesn’t pay.


#12

I would like to use this post to post my vlogs, I am not a physician. I decided a while back to take full responsibility for my own health and try and solve my case of PSC (I also do research on it). I post these updates on my youtube channel every now and then, I would like to set an example and hopefully provide value to your own situation. This is my last update (8min): https://www.youtube.com/watch?v=K7pxOapyzsM&feature=youtu.be


#13

Thanks so much, Davide.