Vancomycin as PSC treatment

I would not wait for the doctors to catch up with the research; I spent 9 years searching for a cure for my daughters and unfortunatley found out about the vanco to late to be effective for my daughter. I spent weeks in the hospital with my daughter praying for a donor and with only 1-2 weeks left we were blessed with a transplant; I do not wish this on anyone. I do not want to sound cynical but I have seen over the years that it is not in the interest of the drug companies to have affordable treatments and I have seen many safe and affordable treatments suppresed. A great example is that Gilead now has a cure for Hep C and the price is 90K enough to bankrupt most people or jack up our insurance rates. Good Luck

UBOB



ubob said:

I know longer keep up on the vancomycin as my daughter got started on it to late, Dr Cox at stanfrod has been using sucessfully for years and appears to get remission with his patients. I did not find out about it until my daughter was around a year aware from her translplant. We had the IV vanco encaspulated by a compounding pharmasist for around $300 per month which we payed out of pocket. If you google Dr. Cox you should find his research and if you call his office they in the past will set up a time for you to consult with him. This is one those nothing to lose and everything to gain senerios. I would also check Dr. Cox for dosage as he was dismayed that the mayo study based on his research was using a much lower dose. Good luck and God Bless. I failed to mention that the price varied imensly from compounding pharmacy to coumpouning pharmacy from $300 per month to $2000 for the same product so shop the pharmacies a day on the phone will save you thousands.

UBOB

One question to those who used vanco:
Are you supposed to use it rest of your life or is it something that you you use few months only (and liver tests remain lowered significantly thereafter)

RJM - that is too funny. Let us know how the rolling papers work out.

Nick - what brand did you switch from and to? Is Dr. Davies still recommending Prasco and Viropharma?

Ted - oral Vancomycin is a treatment, not a cure. I will be on the drug for the rest of my life or until a cure is found. Patients who stop taking Vancomycin will have their PSC return over time (typically after a couple months as the gut microbiome returns to the PSC "normal").

Thanks everybody.

Any guidance when to start vanco?
For example, I have somewhat elevated bilirubin (1.5-2), other values typically normal. This has been the situation for the last 15 years. Psc was diagnosed 3 years ago. Imaging shows some (early?) effects of psc.

Does it make sense to start as soon as possible, or wait until high LFTs?
I dont care about money ($300 month is cheap if it keeps you alive longer term).

I’ll plan to talk to my GI of course but he is clueless (he is teaching at world class school full of Nobel price winners, but seems unable to keep up on latest research in his field)

As soon as possible. Untreated, PSC inflammation will cause the bile ducts to scar over time and the combination will eventually lead to cirrhosis. Progression is hard to predict. We know from the Stanford studies that children with cirrhosis did not respond as well to the treatment when compared to children without cirrhosis. Even before this point there is a lot to worry about. Active PSC inflammation drastically increases the odds of cholangiocarcinoma. Even when the Vanco works to stop the autoimmune reaction, I wouldn't necessarily count on the liver reversing existing bile duct scarring. Anecdotally, some have seen improvements in imaging after treatment, others have not.


hi tbr3 - hope all is well at your end. How is your daughter doing ? Is she still taking Vancomycin ?

I would appriciate your reply and if you could details of your experience with Vancomycin


With our best regards


tbr3 said:

My daughter was diagnosed with PSC and UC at age 4. For 7 years he tried every medication for her UC and nothing worked. She suffered frequent flares, side effects of constant steroid use and multiple hospitalizations. She was about to have her colon removed when we first learned of this vacnomycin treatment with Dr. Cox. We showed the research to our GI Dr.and asked if she could try Vancomycin. She began Vancomycin in April and has been on it for the past 7 months. Since staring Vancomycin her liver numbers and all markers of inflamation became completely normal. This was the first time she had completley normal bloodwork in 7 years! But besides that she has had no symptoms of UC/PSC at all. She has a great appetite, no belly pain, and tons of energy. It has been a miracle and truly life changing. We are so grateful to have found this medication which saved her from serious surgery and gave our daughter her life back.

Our Dr. is in communication with Dr. Cox about her treatment and they are both following the results. Feel free to contact me with any questions.

i am on URSO (250mg - twice a day - after every 12 hours) - after my discovery of PSC.


I am confused - should i stop URSO and Start Vancomycin ? my doc is on leave and would be back in 10 days time. I will check with him if this is available in the country where I am living now. It is known that URSO will not help in any healing process - then why should i continue taking it ? I will surely check with my doc - if the Oral Vancomycin is available in my country (UAE),



jtb said:

As soon as possible. Untreated, PSC inflammation will cause the bile ducts to scar over time and the combination will eventually lead to cirrhosis. Progression is hard to predict. We know from the Stanford studies that children with cirrhosis did not respond as well to the treatment when compared to children without cirrhosis. Even before this point there is a lot to worry about. Active PSC inflammation drastically increases the odds of cholangiocarcinoma. Even when the Vanco works to stop the autoimmune reaction, I wouldn't necessarily count on the liver reversing existing bile duct scarring. Anecdotally, some have seen improvements in imaging after treatment, others have not.

Hi there,

Yes, my daughter is still doing great! She is still on Vancomycin. It will be 3 years for her this month on the Vanco and she has been completely symptom free the whole time. No UC symptoms or PSC symptoms. All her liver numbers have remained normal. She takes 375mg 2xs a day. She doesn't take anything else for PSC or UC.

This medication was completely life changing for her. Dr. Cox at Stanford was the one who discovered this use for Vancomycin. he would be a good person to contact or ask your GI doctor to contact with any questions.

If I can answer any questions, I am happy to.

Blessings,

Tara



Among_PSC_Friends said:


hi tbr3 - hope all is well at your end. How is your daughter doing ? Is she still taking Vancomycin ?

I would appriciate your reply and if you could details of your experience with Vancomycin


With our best regards


tbr3 said:

My daughter was diagnosed with PSC and UC at age 4. For 7 years he tried every medication for her UC and nothing worked. She suffered frequent flares, side effects of constant steroid use and multiple hospitalizations. She was about to have her colon removed when we first learned of this vacnomycin treatment with Dr. Cox. We showed the research to our GI Dr.and asked if she could try Vancomycin. She began Vancomycin in April and has been on it for the past 7 months. Since staring Vancomycin her liver numbers and all markers of inflamation became completely normal. This was the first time she had completley normal bloodwork in 7 years! But besides that she has had no symptoms of UC/PSC at all. She has a great appetite, no belly pain, and tons of energy. It has been a miracle and truly life changing. We are so grateful to have found this medication which saved her from serious surgery and gave our daughter her life back.

Our Dr. is in communication with Dr. Cox about her treatment and they are both following the results. Feel free to contact me with any questions.

tbr3

I am really glad to know about your daughter's health. There are two reasons for my happiness. First of all - naturally - everyone on earth wish children to grow as healthy as possible (I have two daughters and i know what you would have gone thru when there was no vancomycin) and thus it makes me happy that she is now growing as healthy as possible (given the nature of PSC).

Second reason for my being happy is - Vancomycin treatment gives hope for life (prolongation) as well - since I am recent patient of PSC (don't know since when i have it - but was told by doctors only three months ago - so i am /was in shock as compare to those who have /had digested the shock).

I wish her very well and hope this medicine works with Adults as well and many people benefit from this discovery and that this medicine prolong their Liver Transplant until a Reasonable cure is found.

one more question : which brand of Vancomycin you are using ? are there good brands / low quality brands (I mean generic). i live in third world and probably will not have access to first world's medicine.

Best regards

Brand makes a big difference for many of us. For oral Vancomycin (pills), name brand Viropharma and generic Prasco are recommended. For me personally, generic Alvogen did not work particularly well. For IV Vancomycin (taken orally), I have had success with generic Kabi and another poster has had success with generic Valeo. I have a suspicion that, unlike the oral generics, the IV generics are likely high quality across the board.

My recommendation is to first take what is available. If blood tests do not normalize or if symptoms persist, try to track down a different brand to see if it makes a difference.

Hi Cactusgirl,

Did the VSL #3 help with the colonoscopy results, has it had a positive impact on the liver?

Cactusgirl said:

VSL #3 is a probiotic. It is the best on the market. She takes 1 packet of 450B 2x a day. Now that she has 2 completely solid stools per day the VSL will help with mucosal healing in the colon. We will repeat her colonoscopy in 7 months.

Here are the VSL#3 articles given to me by my daughter's doctor:

Am J Gastroenterol. 2010 Oct;105(10):2218-27. Epub 2010 Jun 1.

Treatment of relapsing mild-to-moderate ulcerative colitis with the probiotic VSL#3 as adjunctive to a standard pharmaceutical treatment: a double-blind, randomized, placebo-controlled study.

Tursi A, Brandimarte G, Papa A, Giglio A, Elisei W, Giorgetti GM, Forti G, Morini S, Hassan C, Pistoia MA, Modeo ME, Rodino' S, D'Amico T, Sebkova L, Sacca' N, Di Giulio E, Luzza F, Imeneo M, Larussa T, Di Rosa S, Annese V, Danese S, Gasbarrini A.

Source

"Lorenzo Bonomo" Hospital, Andria, Italy. antotursi@tiscali.it

Abstract

OBJECTIVES:

VSL#3 is a high-potency probiotic mixture that has been used successfully in the treatment of pouchitis. The primary end point of the study was to assess the effects of supplementation with VSL#3 in patients affected by relapsing ulcerative colitis (UC) who are already under treatment with 5-aminosalicylic acid (ASA) and/or immunosuppressants at stable doses.

METHODS:

A total of 144 consecutive patients were randomly treated for 8 weeks with VSL#3 at a dose of 3,600 billion CFU/day (71 patients) or with placebo (73 patients).

RESULTS:

In all, 65 patients in the VSL#3 group and 66 patients in the placebo group completed the study. The decrease in ulcerative colitis disease activity index (UCDAI) scores of 50% or more was higher in the VSL#3 group than in the placebo group (63.1 vs. 40.8; per protocol (PP) P=0.010, confidence interval (CI)₉₅(%) 0.51-0.74; intention to treat (ITT) P=0.031, CI₉₅(%) 0.47-0.69). Significant results with VSL#3 were recorded in an improvement of three points or more in the UCDAI score (60.5% vs. 41.4%; PP P=0.017, CI₉₅(%) 0.51-0.74; ITT P=0.046, CI₉₅(%) 0.47-0.69) and in rectal bleeding (PP P=0.014, CI₉₅(%) 0.46-0.70; ITT P=0.036, CI₉₅(%) 0.41-0.65), whereas stool frequency (PP P=0.202, CI₉₅(%) 0.39-0.63; ITT P=0.229, CI₉₅(%) 0.35-0.57), physician's rate of disease activity (PP P=0.088, CI₉₅(%) 0.34-0.58; ITT P=0.168, CI₉₅(%) 0.31-0.53), and endoscopic scores (PP P=0.086, CI₉₅(%) 0.74-0.92; ITT P=0.366, CI₉₅(%) 0.66-0.86) did not show statistical differences. Remission was higher in the VSL#3 group than in the placebo group (47.7% vs. 32.4%; PP P=0.069, CI₉₅(%) 0.36-0.60; ITT P=0.132, CI₉₅(%) 0.33-0.56). Eight patients on VSL#3 (11.2%) and nine patients on placebo (12.3%) reported mild side effects.

CONCLUSIONS:

VSL#3 supplementation is safe and able to reduce UCDAI scores in patients affected by relapsing mild-to-moderate UC who are under treatment with 5-ASA and/or immunosuppressants. Moreover, VSL#3 improves rectal bleeding and seems to reinduce remission in relapsing UC patients after 8 weeks of treatment, although these parameters do not reach statistical significance.

Clin Gastroenterol Hepatol. 2009 Nov;7(11):1202-9, 1209.e1. Epub 2009 Jul 22.

The probiotic preparation, VSL#3 induces remission in patients with mild-to-moderately active ulcerative colitis.

Sood A, Midha V, Makharia GK, Ahuja V, Singal D, Goswami P, Tandon RK.

Source

Department of Gastroenterology and Medicine, Dayanand Medical College and Hospital, Ludhiana, India.

Abstract

BACKGROUND & AIMS:

Probiotics can maintain ulcerative colitis (UC) in remission effectively, but little is known of their ability to induce remission. We conducted a multicenter, randomized, double-blind, placebo-controlled trial of a high-potency probiotic, VSL#3, for the treatment of mild-to-moderately active UC.

METHODS:

Adult patients with mild-to-moderate UC were assigned randomly to groups that were given 3.6 x 10(12) CFU VSL#3 (n = 77) or placebo (n = 70), twice daily for 12 weeks. The primary end point was a 50% decrease in the Ulcerative Colitis Disease Activity Index (UCDAI) at 6 weeks. The secondary end points included remission by 12 weeks and reduction in total individual UCDAI parameters from baseline at 12 weeks. Intention-to-treat analysis was performed.

RESULTS:

At week 6, the percentage of patients with an improvement in UCDAI score that was greater than 50% was significantly higher in the group given VSL#3 (25; 32.5%) than the group given placebo (7; 10%) (P = .001). At week 12, there were 33 patients given VSL#3 (42.9%) who achieved remission, compared with 11 patients given placebo (15.7%) (P < .001). Furthermore, significantly more patients given VSL#3 (40; 51.9%) achieved a decrease in their UCDAI that was greater than 3 points, compared with those given placebo (13; 18.6%) (P < .001). The VSL#3 group had significantly greater decreases in UCDAI scores and individual symptoms at weeks 6 and 12, compared with the placebo group.

CONCLUSIONS:

VSL#3 is safe and effective in achieving clinical responses and remissions in patients with mild-to-moderately active UC.

I also started to use prescription strength VSL#3 along with blueberries. There are clinical studies showing that blueberries taken together with probiotics give extra help for UC.
I use both frozen wild blueberries and fresh bush blueberries.

See eg http://www.globalhealingcenter.com/natural-health/blueberries-and-probiotics/

More recent clinical trial results if you google.

No change in my liver function tests but colitis is in check.

Thanks Ted, I'm glad it has an impact on UC at least.

Ted said:

I also started to use prescription strength VSL#3 along with blueberries. There are clinical studies showing that blueberries taken together with probiotics give extra help for UC.
I use both frozen wild blueberries and fresh bush blueberries.

See eg http://www.globalhealingcenter.com/natural-health/blueberries-and-p...

More recent clinical trial results if you google.

No change in my liver function tests but colitis is in check.

I am here reading old posts trying to find out the same thing. My price after insurance would be $800. a month (almost $4,000. without insurance), for the Ani brand, the best and only one to take, from what I’ve been reading (and of course $1,200. first month of each new year cause of deductible). I am trying to figure out options. Don’t want black teeth and more dental issues so I don’t want to take liquid. What do people do to get this drug cheaper? Thanks so much.

Just spent a few hours reading through this thread. Got my answer.
Thanks so.

So you are getting the IV Vanco powder direct? From who? Can you by chance message me a name, number? I like the rice paper idea!! Good thinking.

Thanks for this info about blueberries. Started taking them with my probiotic.

Hi SusanG,
I am not in US so obtainability will be different in many ways from your system. I simply had it prescribed by my family Dr., but only after I presented quite a case with scientific papers and other web based Vancomycin support - which I read and really understood details to be ready for discssion and opposition. My specialists didn’t want to be bothered - didn’t believe that it could work. And didn’t want to take the risk (their risk or something going wrong and they are responsible for making an off-label prescription. when it did appear to work, specialist took and interest - I guess were forced to face the fact that it may have worked - and so if my family Dr retires or something, they might have to do the prescribing . I guess i forced their hand.

Costs are expensive here too without coverage. 800 dollars a month for compounded.
Absorb the literature, take it with you to your specialists, ask them to try it out. Also look for studies that will get you on it, google search clinicaltrials.com psc.
My Dr’s are now wondering - as am i - if i didn’t have post transplant PSC at all (rPSC), that it might have been some temporary LFT elevation that would have gone away on its own (but I had taken Vanco so it looked like cause and effect). I don’t know, off vanco now, waiting for lft recurrance to study it properly.
I really wish you luck, perservere and insist!!
Rod

SusanG
December 23 |

So you are getting the IV Vanco powder direct? From who? Can you by chance message me a name, number? I like the rice paper idea!! Good thinking.

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In Reply To

rjm
March 13 |

Yes please keep us updated. As Vancomycin is very new ground, this type of information share can be as valuable and far faster than waiting for the scientific studies. I will try to be as careful with my facts as I can so as to not lead others in a wrong direction. I applied to my insurance company …
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