Quantcast

My experience with FMT (and my intro & vlogs)


#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.


#14

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


#15

No worries Susan. Thanks,
Pam


#16

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


#17

Yes, Pam, it happened on CutisPharma!!


#18

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


#19

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.


#20

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?


#21

I have Crohn’s disease since many years and I have actually only had one flare up during my entire life, and I’ve been symptom-free ever since. I don’t have any PSC-symptoms either, so I don’t really know if vanco is working. I’m going to take new blood samples in 3 weeks, and I hope my LFT:s have decreased. :crossed_fingers:

I’m from Sweden, and kids here are primarly treated with a 6-8 week exclusive enteral nutrition diet (instead of steroids). In plain English, this means that kids only drink nutritional supplement drinks for 6-8 weeks (in other words, they totally abstain from solid food). The theory behind this is that the intestines “rest” when you don’t eat any solid food, and thereby get time to recuperate. I got this exact treatment when I hade my one and only flare up as a kid, and it worked wonderfully and I’ve been symptom-free ever since. This is a very unorthodox treatment for American doctors, but it is totally risk-free since the only thing you do is abstain from solid food and anything containing fibers for 6-8 weeks. I’d certanly recommend trying this treatment before doing something drastic. Keep in mind, abstaining from solid food is a huge mental challenge and your son has to be 110% motivated in order to complete such a treatment.

On a side note, in Japan, adults are also treated with exclusive enteral nutrition.


#22

Thank you Andreas. I totally agree with nutrition part and doctors here in US don’t think nutrition plays any role with digestive diseases. My son is an adult and he is totally going with what doctors say about nutrition or don’t say. Unfortunately, in last 17 years no doctor has recommended him to see a nutritionist. I so much wish some one would tell him to go on liquid diet or look at his diet. We have tried to talk about this all these years but it is now moving to colectomy if vanco doesn’t help. It is looking like I am bashing the doctors but I know their hands are tied, it is the whole system which heavily favors pharmaceuticals ONLY approach while for complex diseases like these multi pronged approach should be applied to improve quality of life.


#23

The fact that the American system favors pharmaceuticals is both a bad and good thing. I have to fly to the US and pay everything out of pocket in order to get a hold of vancomycin, since doctors in Sweden are too scared of prescribing it.

If you’d like to try it, you could visit a doctor that’s more posetive towards it. You could also try it out yourselfs, since it ain’t illegal to abstain from solid food. Keep in mind though, it is very important to not abruptly change your eating pattern. You should change it slowly over the course of a week.


#24

Andreas, I hope you are successful in getting Vanco prescription here in US.
Thanks for the tip about slowly changing the eating pattern not abruptly.


#25

Andreas, very interesting. 2 questions:

-What does the 6-8w liquid diet consist of?
-Why are you going to the us for vanco? it is cheaper over here in Europe and you can find prescribing physicians.

Davide


#26

I’d read many on Vancomycin have UC resolve as well as PSC stop progressing or reverse even. As I’ve dysplasia in a area of my colon I’m praying for this to happen. As I wrote elsewhere, my colonoscopy and forty biopsies three months into taking VO showed no change.