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
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.
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.
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.
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.
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.
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
Pam,
So sorry I didn’t see your message here. I’m not sure how to advise. I’m so sorry for you son’s struggles. I will hope others here might have resources or information. I’ve never taken steroids nor, up until these past six months, ANY allopathic pharmaceutical. Keep us updated on your son. Best of care,
Susan
SusanG, one question: You said “My clinical symptoms improved VASTLY immediately”. I am wondering if this happened while you were on CutisPharma vanco or only after you switched over to ANI? Thanks.
Pam
Thank you Susan. Oh,so the positive effect on UC you saw was from the compounded form. My son also started compounded Vanco (Fagron) on Saturday (7/14) at 500 mg 3x a day (1,500 mg) but his frequency of motions hasn’t come down yet (7-8 motions). So trying to figure out if we should change the number of times he is taking Vanco and should we expect it to start working may be in a week or so. We were so hopeful that at this dose his UC symptoms might get better within few days.
Pam
I also started taking compounded vanco last week (250 mg Firvanq 4 times a day, from CutisPharma). For some people, vanco helps against UC, but this is only an added bonus. The reason for taking vanco is after all to hopefully slow down or stop the PSC-progression.
Andreas, yes PSC is the reason to start long term vanco therapy but in my son’s case his PSC is on quieter side at the moment. When we saw that so many people are reporting UC getting better as well we felt to try this as he can not stay on 30 mg prednisone any longer due to bone loss, sugar being constantly high etc. How are you doing on Vanco so far? Do you have UC too?