Just read the research on paediatric PSC treatment at Stamford University using the antibiotic vancomycin with very promising results (Spring 2011 newsletter) Most patients treated had excellent results and I wonder as the parent of a 14yr with AIH/PSC why aren't our liver specialists using this treatment to reduce and in some cases reverse the incidence of inflammation of the bile ducts? Surely this is one avenue that should be explored esp in the early stages of the disease.Has anyone else heard of this development or used vancomycinin their treatment?If so what were the results/side effects. I will definitely be speaking to our specialist about this as any hope is worth pursuing, especially when a simple antibiotic that is easy to administer may hold some promise.
I spoke to Dr. Cox at Stanford and started my daughter on this protocol, unfortunately for her her PCS was to far advanced. Dr. Cox claims a amazing sucsess rate. Mayo of Rochester is doing clinical studies but at a much lowere dose than Dr Cox uses. I bleive the Dosage that Dr Cox prescribes is 500mg 3xday. This is a very expensive drug ; however if you shop the compounding pharmiscits they can take IV vanco and encapsalate it for around $100 as opposed to $1500 per month. Dr. Cox will consult by phone any patient that calls. It appears that if this is used early enough it may be a cure. We started it a year ago and unfortunately my daughter was in end stage faliure at the time and we are currently waiting for a liver.
UBOB
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.
Antibiotic effect for reduction of inflammation makes sense but is scar tissue not irreversible?
Great to hear you are having such wonderful results with Vancomycin - my son is in the very early stages of his PSC so we have not started treatment yet but comforting to know we have that amazing lifeline in reserve when the time comes. My son's liver specialist knew nothing about this here in Australia and when we discussed it, he said his only concern was that as Vancomycin is a very heavy duty antibiotic used mainly for serious golden staph infections that are resistant to other treatment , if someone being on it long term was to contract golden staph in hospital they may have problems fighting it. Probably a small hiccup for our kids when dealing with something like PSC that has limited success with other treatments. I have been in touch with Dr Davies (works with Dr Cox) through PSC Children's Foundation who is more than happy to work with our liver specialist when required.
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.
Hi Alix,
From my limited understanding, treatment of PSC with vancomycin has to start early enough before scarring has advanced to a point where bile ducts are being blocked. My son is currently stage 2 - beading along several bile ducts. He has no symptoms yet of PSC (only found on blood test for arthritis). Therefore some people with PSC may not benefit from Vancomycin if disease found at advanced stage. Children seem to be responding to this treatment really well -not sure about trials with adults.
Alix said:
Antibiotic effect for reduction of inflammation makes sense but is scar tissue not irreversible?
trials are being done at mayo but at low doses. why isnt this a standard treatment, not enough money to be made. if you have the vanco compounded from iv vanco its 2-300. this is the same reason wellbutrin isnt used for crohns. its to cheap.
SMick said:
Hi Alix,From my limited understanding, treatment of PSC with vancomycin has to start early enough before scarring has advanced to a point where bile ducts are being blocked. My son is currently stage 2 - beading along several bile ducts. He has no symptoms yet of PSC (only found on blood test for arthritis). Therefore some people with PSC may not benefit from Vancomycin if disease found at advanced stage. Children seem to be responding to this treatment really well -not sure about trials with adults.
Alix said:Antibiotic effect for reduction of inflammation makes sense but is scar tissue not irreversible?
My 15 year old daughter is pre-stage 1 PSC. She had severe pancolitis. Her GI and Hepa doctors in our home city put her on Urso and azathioprine. The Urso normalized her liver enzymes for the most part but she still had UC symptoms. They did not want to try the Vanco because it is a "strong antibiotic." She had a bad reaction to the azathioprine. We went to a doctor out of our state who agreed to put her on oral vancomycin pills (OV) 500mg 3x day. OV is poorly absorbed and so has no side effects. Within 2 days all of her UC symptoms were gone. She went from 4-5 liquid stools to 1-2 solid stools!!!! She has gained 5-6 pounds in 5 weeks. Her complexion has cleared up. She has a new life. We have her colonoscopy next Monday and will update as to how her colon looks. The the method of action for OV is as an immunomodulator (not an antibiotic) causing an increase in Treg cells. I have attached the article about OV for treatment of pediatric PSC/UC.
124-CoxarticleonVancoOct2012.pdf (391 KB)OV pills are more expensive than compounded but they are generic for insurance purposes.
This article gave me hope, so when I read this article a couple of months ago I was ecstatic since some of the most important medical discoveries have been made by accident. After reading all the feedback, I plan to do my best to get in touch with Dr. Cox or Dr. Davies. Here's the article for anyone that might want to read it.
Wishing everyone well this holiday season!
Lisa,
A very loving wife and devoted caregiver for a very special man with psc (Sept.'12)
ohh, and strong advocate to find a cure together :)
123-medmag_2011spring.pdf (1.73 MB)Hi,
Even if there is bile duct scar tissue the duct can be dilated with a balloon or stent so not a worry there...worst case, if the disease can be shut down with Vanco and a stent or balloon fails surgery can correct for the scarr tissue in the duct.
SMick said:
Hi Alix,From my limited understanding, treatment of PSC with vancomycin has to start early enough before scarring has advanced to a point where bile ducts are being blocked. My son is currently stage 2 - beading along several bile ducts. He has no symptoms yet of PSC (only found on blood test for arthritis). Therefore some people with PSC may not benefit from Vancomycin if disease found at advanced stage. Children seem to be responding to this treatment really well -not sure about trials with adults.
Alix said:Antibiotic effect for reduction of inflammation makes sense but is scar tissue not irreversible?
Hi Shutitdown:
I've been reading on bile duct surgery and haven't come across a surgical procedure to 'correct' scar tissue in the duct, just bypass surgery - which is an absolute last resort. Wish there were though. Just spent a couple days in hospital on IV abx for a very nasty cholangitis and badly obstructed stent which was removed, to be replaced in a few wks.
My husband has PSC for his second time. He had a liver transplant in 1998 and PSC has returned in the new liver. Can someone, anyone please let me know more about if the oral Vancomycin is still showing to be a promise? I am going crazy here worrying about him.
Im wondering if this treatment would work for me. Im not exactly pediatric. I'm 21 but thank god im in the early stages.
Hi Sonia, my 15 year old daughter started oral vancomycin (OV) on October 18, 2012 - 500mg 3x day. She also takes 900B VSL#3 per day in yogurt. She takes her meds religiously @ 6, 2, and 10. Within 2 days of starting the OV all her clinical UC symptoms disappeared. We got her liver tests back two days ago and EVERYTHING is normal (except the GGT was 40, down from 367). Will see her hepatologist this coming Wednesday. If you want further info from me let me know how I can help. While the successful OV trials have been on children, the adult trials seemed to use lower doses so the higher dose might be effective. i would see if your husbands doc will put him on a higher dose. My prayers are with you and your husband.
Bernie, At 21you are probably still a ped. I would absolutely try the OV. Let me know how you do and if you need some of my research. C
Thank you so much for the info. I am going to call my husband's doctor tomorrow morning and get him an appointment to discuss this. His liver numbers are rising, he is yellow, and his UC is acting up really bad.
Cactusgirl said:
Hi Sonia, my 15 year old daughter started oral vancomycin (OV) on October 18, 2012 - 500mg 3x day. She also takes 900B VSL#3 per day in yogurt. She takes her meds religiously @ 6, 2, and 10. Within 2 days of starting the OV all her clinical UC symptoms disappeared. We got her liver tests back two days ago and EVERYTHING is normal (except the GGT was 40, down from 367). Will see her hepatologist this coming Wednesday. If you want further info from me let me know how I can help. While the successful OV trials have been on children, the adult trials seemed to use lower doses so the higher dose might be effective. i would see if your husbands doc will put him on a higher dose. My prayers are with you and your husband.
Bernie, At 21you are probably still a ped. I would absolutely try the OV. Let me know how you do and if you need some of my research. C
Sonia96 said:
Thank you so much for the info. I am going to call my husband's doctor tomorrow morning and get him an appointment to discuss this. His liver numbers are rising, he is yellow, and his UC is acting up really bad. What is this 900B VSL#3 you are talking about?
Cactusgirl said:Hi Sonia, my 15 year old daughter started oral vancomycin (OV) on October 18, 2012 - 500mg 3x day. She also takes 900B VSL#3 per day in yogurt. She takes her meds religiously @ 6, 2, and 10. Within 2 days of starting the OV all her clinical UC symptoms disappeared. We got her liver tests back two days ago and EVERYTHING is normal (except the GGT was 40, down from 367). Will see her hepatologist this coming Wednesday. If you want further info from me let me know how I can help. While the successful OV trials have been on children, the adult trials seemed to use lower doses so the higher dose might be effective. i would see if your husbands doc will put him on a higher dose. My prayers are with you and your husband.
Bernie, At 21you are probably still a ped. I would absolutely try the OV. Let me know how you do and if you need some of my research. C
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. ■■■■■■■■■■■■■■■■■■■■
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.
Bernie, At 21you are probably still a ped. I would absolutely try the OV. Let me know how you do and if you need some of my research. C
bernie said:
Im wondering if this treatment would work for me. Im not exactly pediatric. I'm 21 but thank god im in the early stages.
The antibiotic, vancomycin, has did wonders for my daughter who has UC and PSC. Her blood readings has improved 500%. See this article. http://stanmed.stanford.edu/2011spring/article6.html
Read more testimonies here.