PLEASE keep me updated on your progress Yadran =)
Yadran said:
You're right C.girl. When I told mine docs about it they were wondering, but it also makes me wonder how low comunication is between medical centers that treat similar illnesses. However they did put me on a short term trial, just as you suggest to Sonia, it will be for one week hopefully while I'm here in the hospial. I expect to receive 1000ml daily in liquid form. Time will tell.
For your information, my daughter takes 500mg 3x day. We will likely reduce the dosing once we are sure she is stable. What results do they expect in only 1 week?
Sure I will, donāt worry 
itās been just one day now and four doses. Does your husband take Urso and what dose? Iām on 2x500gr a day. Plus of course imunosupres. Sandimun-ciclosporinum and CellCept-mycophenolat.
Sonia96 said:
PLEASE keep me updated on your progress Yadran =)
Yadran said:Youāre right C.girl. When I told mine docs about it they were wondering, but it also makes me wonder how low comunication is between medical centers that treat similar illnesses. However they did put me on a short term trial, just as you suggest to Sonia, it will be for one week hopefully while Iām here in the hospial. I expect to receive 1000ml daily in liquid form. Time will tell.
How is she, any side effects in the meantime? Iām not sure how they look at this, but they did agree and since no other choice but new transplant might think it wonāt harm to try. Even with the new liver problem will not disappear. I hope they will get in touch with Vienna MedUni and that Nor-Urso will be the final solution. http://www.sciencedaily.com/releases/2013/02/130226081012.htm
Cactusgirl said:
For your information, my daughter takes 500mg 3x day. We will likely reduce the dosing once we are sure she is stable. What results do they expect in only 1 week?
He takes Actigall (urso) 300mg 3x day and Prograf 1mg 2x day and prednisone 5mg day.
Yadran said:
Sure I will, don't worry ;) it's been just one day now and four doses. Does your husband take Urso and what dose? I'm on 2x500gr a day. Plus of course imunosupres. Sandimun-ciclosporinum and CellCept-mycophenolat.
Sonia96 said:PLEASE keep me updated on your progress Yadran =)
Yadran said:You're right C.girl. When I told mine docs about it they were wondering, but it also makes me wonder how low comunication is between medical centers that treat similar illnesses. However they did put me on a short term trial, just as you suggest to Sonia, it will be for one week hopefully while I'm here in the hospial. I expect to receive 1000ml daily in liquid form. Time will tell.
Hi Sonia, just short feedback, Iām taking vanco since last Thursday and already at home. Docs found nothing via magnet screening so no stent was suggested. Iām fine at the moment, still not sure how long will be on vanco, doctors are bit reserved on this case yet agreed that might help. I found this article today, not sure I saw it before - Successful Treatment of Recurrent Primary Sclerosing Cholangitis after Orthotopic Liver Transplantation with Oral Vancomycin, http://www.hindawi.com/crim/transplantation/2013/314292/
take a look and let me know what you think and howās your husband? Take care, until later
Hi Cactusgirl-
We just started our son on Vanco - no huge results yet, on day 11. Wondering when we should consider upping his dose, but will confer with docs on that. I think Cox recommends upping dose at one month if necessary. My son's IGG is going down, but that might still be due to the prednisone, which is still at a high dose. Were you the one who said to avoid taking vanco with OJ or acid? Do you have any references on this. My son takes his with a huge fruit smoothie each morning. Also, our GI doc said there was no point in the probiotic while he's taking the vanco, because the vanco would kill it. I'd love any references on either of these if you have any... Thanks!!
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
Hi,is there any information, if Vancomycin is helpful in the case of my daughter with frequent inflammation of the main bile duct.The liver is still healthy though.We Live in Germany and the docs only use Vancomycin for cl.difficile etc.
Nelle
Nelle,
My daughter has been taking vanco since Aug '13. Her response has been remarkable. Just had a colonoscopy in jan of this year and results came back with no signs of inflammation and āmarked improvementā from a year ago when she was diagnosed.
If you would like some more info on it I would be happy to share. Pm me if interested.
Brad if you could send me some information on the vanco. I have a 7 year old son that was originally diagnosed with Crohns a month later they are indicating they have found bile duct inflammation. His GGT marker is 701, his alt 145 his ast 140. We are awaiting the results of a biopsy and MRI as they suspect PSC. He just stopped a 6 week IBD enteral therapy for Crohns 3 days ago and his stools have reverted to being liquid. Does this sound at all like your daughter at the early stages?
Brad S said:
Nelle,
My daughter has been taking vanco since Aug '13. Her response has been remarkable. Just had a colonoscopy in jan of this year and results came back with no signs of inflammation and "marked improvement" from a year ago when she was diagnosed.
If you would like some more info on it I would be happy to share. Pm me if interested.
Yes, but she has uc not crohns. Her GGT was never that high, it was in the 600ās. I can send you some info, just send an email to the one I have in my profile. Itās just the case studies and published work from the Stanford group, but it is amazing the results they have so far.
Vancomycin is definitely worth trying out even if the patient is an adult. I am a 32 year old PSC sufferer and Vanco has mostly normalized my LFTs and eliminated many of my symptoms.
For a little background - I have significant strictures including the common hepatic duct and, prior to Vanco, was suffering from frequent cholangitis attacks. I am also one of the oddballs with no colitis issues. My long-term numbers for ALKP and ALT tracked around 200 and jumped as high as 900 when having a cholangitis attack.
With 250mg/4xday Vanco, my ALKP has normalized and my ALT hovers in the high 40s - low 50s, just a touch off from normal. These are numbers I havenāt achieved during my adult life even when I was previously on high-dose URSO. While on Vanco I have not had a cholangitis attack and no longer suffer from itching and nausea. I remain slightly fatigued, but Iām hopeful that if I remain on this treatment and if it can reverse some of the damaging effects of PSC, that over time Iāll get all of my energy back.
A couple points of note regarding Vanco treatment:
1) Not all Vanco is created equal
There is a study floating around that measures the effectiveness of brand name Vanco and a number of the generics when treating C. diff infections. The result is that the generics have varying levels of effectiveness when measured against the name brand. Some of the generics were half as effective as name brand Vanco.
The study is a bit outdated and from what I understand the process for creating Vanco has changed, so the results as far as what company is best are less relevant, but the main take-away is that variations are to be expected across different companies. If one brand is not effective or marginally effective, it wouldnāt hurt to switch brands for a few months to see if there is any improvement.
I began my oral Vanco treatment with generic pills. The pills eliminated my symptoms but improved my LFTs only slightly. I switched to compounded IV Vanco (taken orally) from a different generic manufacturer primarily for cost reasons and discovered that this new Vanco brought my LFTs down to (mostly) normal.
2) Doctors are reluctant to try experimental treatments
All of the existing Vanco studies require patients to have IBD issues. Being blessed with cooperative intestines meant that I couldnāt participate in these studies. It took me three doctors before I was able to get the okay for long-term Vanco use. My advice is to arm yourself with as much information as possible regarding Vanco and be able to provide and summarize the available studies. The party line for doctors is to wait for PSC patients to get sick then treat the symptoms. It is up to the patient to be proactive to pursue an alternative course.
3) Compounded oral Vanco (liquid) can be hard on the teeth.
Oral Vanco is generally well tolerated with very few side effects. The only side effect that Iāve noticed is that taking Vanco in liquid form tends to cause excessive plaque buildup and brown stains on the teeth. Iām guessing it is causing an imbalance of mouth bacteria which leads to these issues. My solution is to go to the dentist more frequently for cleanings. Iām curious if anyone else has experienced this and may have a way to eliminate or better handle any teeth issues.
JTB - I hope you have a look at your addition to this thread someday and see this comment. I want to thank you. My story is as long as most here, to make it short, I had PSC then live doner transplant, then recurrant PSC after 2 years. I worried for about an hour or two until I did my own homework this time and I Googled the words "PSC Treatment" (I know, obscure terms right, I can understand why none of my dozens of Dr.s would ever have thought of this). Obviously Vanco was of great interest and relief (at I could try something), but I was discouraged by the focus and the hypothesis of effectivity mechanism association with Pediatic or IBD situation. Neither of which is me. So then I found your note on this forum. Hence the relief, another oddball with cooperative intestines! with Vanco success! Shortening the story again, I got Vanco, I had to threaten to make it in my garage Breaking Bad style, but I got the Vanco. taking 1500 mg a day and it works - LFT normalized. Admittedly my new liver had not been under duress that long - and my urgency to get on this drug was to keep it that way. It does stain my teeth - I'm glad the dentist seems to be a solution to that. Such problems I could not be happier with. Again my thanks to you for posting the advise you did - I got much of it and others. With the success of my personal case study, I am curious as to why this apparently effective drug does not have more 'buzz' than it does - here and online. Cost perhaps, are many folks too far along, is it occasionally inneffective, access? Anyway be well JTB.
RJM
Thanks, RJM. Great to hear it worked for you too.
Brief update on my end. Still on Vanco. My numbers kept going down and have been completely normal for the last 9 months (ALP 60, ALT 30). No symptoms or cholangitis. Life is good.
It sounds like you are taking a compound. If you know the brand or NDC of the Vancomycin you are taking, I would definitely like to know for future reference. I believe there is less brand disparity on the IV side, but it is still good to know what is known to work. For anyone curious, I take Kabi (APP).
The main reason oral Vancomycin doesn't have buzz is money. It seems like every month we have news reports on potential up and coming treatments and trials for PSC. These pharmaceutical companies are pushing new drugs with a ton of time left on their patents. They are paying for the current studies and are sponsoring for orphan drug designation. Viropharma's patents on IV and oral Vancomycin have expired. Viropharma won't issue any press releases and they won't pay for any trials because they don't stand to make any money on the product. I can't stress how important this big money is to push for bigger trials and FDA approval. Current Vanco trials are tiny because they are privately funded. The drug costs alone for a 3 month 100 person trial would exceed $1 million.
There is less acceptance on the adult side because the adult trials have thus far been less successful. Doctors and patients often attribute the difference in results to age, but this was only one factor. Each study (Mass General, Mayo, Stanford) used wildly different protocols that likely contribute to the difference in results. Mass General used the IV dosing schedule (2xday) for a drug that doesn't leave the gut (oral Vanco C-diff treatments call for 4xday). Mayo used a lower dose (500-1000mg) and possibly an inferior generic (they don't have a record of the brand used). Hopefully the ongoing Stanford adult trial will hope to improve awareness and acceptance of the treatment.
I am basing my dosing on the protocol from the current adult trial at Stanford (i.e 500 mg 3 times day). I am not getting it compounded, I have to get it in IV form (powder), comes in small glass vials at 500mg per vial. So I dilute and take orally, the contents of 3 vials a day. I end up with a lot of empty glass containers. The IV form, according to the drug info in the box, can be taken orally - and no doctor or pharmacist has balked at all at the way I'm taking it. I would prefer capsules but this IV stuff is the only form covered by my insurance. The rub is that it is not in great supply and is a pain to source. Consequently I run around to differenct pharmacies in month getting dribs and drabs. I guess the insurer covers it in this form because they assume this expensive drug is for IV use and temporary. The stuff I use is Val-Vancomycin by Valeo Pharma Inc DIN 02342855. I have intermixed with Hospira Pharmceuticals product when I can't get the Valeo. Drug plan has declined special request to cover Oral capsules (even though cheaper for them - duh). I am looking into direct from manufacturer to get a more secure supply.
But LFTs are steady at low normal, puritus is vastly reduced too, slowly declining it seems.
BTW, I agree with your insight on my curiosity about the 'lack of buzz' for this treatment. Money equalt Buzz, Truth not as powerfully. I still wonder what I am missing when it comes to the discussions on this forum, among this special interest community - why is the swithboard not alight with every second entry about Vancomycin. I believe I am either missing something about its ineffectivity for some cases, or its extreme costs make it an undesirable option to other treatments (of whose efficacy may be better than I'm guessing they are), or some are too far along as I once was before transplant.
All I can do is shout abouts it success for me, and according to literature where before and after liver biopsies were taken on a patient, is allows reversal of the PSC stricturing, not simply a head- in- the- sand/ LFT's-go-away effect like Urso (Urso akin to Tylenol for Cancer - just cause pain-marker went away doesn't mean disease did)..
I will keep the forum informed with any more info on my case that develops.
cheers
RJM
Thanks for the info RJM. I wasn't aware that pharmacies will dispense the IV Vanco powder. This is very useful for me right now because my insurance has stopped covering compounds, but will cover the drug by itself.
I'm also a bit puzzled as to why oral Vanco hasn't caught on more than it has. Another factor I have noticed, both personally and from the forums/groups, is that while a number of patients are inquiring about the treatment, many doctors aren't willing to prescribe. This is a pretty significant roadblock and I think it is due to a couple factors. Some doctors don't understand the drug (oral administration =/= IV administration) and most need to be educated about the existing research (they don't have time to find the latest/greatest for their one PSC patient). Ultimately though I think it is a perceived liability issue - most doctors don't want to be the one doing something different (the status quo guidelines for PSC being "do nothing") on the off chance something goes wrong.
Jtb: I agree with your conclusions.
Vanco is basically experimental drug, doctors dont know about it, it is expensive and difficult to find, no proper guidance about dosage etc.
Hope Stanford trial changes this once trial phase 3 completes soon
Just wanted to let you guys know about my experience with Oral Vanco...Anyways I am being treated by Dr. Davies in Sacramento, CA. She works with Dr. Cox at Stanford. I have been on it for almost a year, about 6 months ago we had to change which manufacturer I was getting the drug from..apparently it wasn't a good brand and I can find that out next week. My numbers have dropped and I would see the drug has no side affects so far. I am about to have a biopsy and endoscopy done in June. Blood work is back to normal, it is expensive. 9200$ for 180 pills..
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 to get coverage for Oral Vancomycin but was told they will only cover certain IV brands - so I will continue to down orally the IV powder form. So in follow up to an inquiry from JTB some time ago, the stains in my teeth (apparently a consequence of compounded oral liquid, and the IV powder) do come off with some persistant ultrasonic water picking at the dentist. Not so easily though. So here's what I'm doing. Taking info from how herbal medicine people take there potions, I got some cigarette paper (rice paper), dumped the powder from the factory glass vile into the paper, twisted into a wee ball and down the hatch bypassing my pearly whites and saving on the time and expense of a capule machine from Amazon. Not only that but I was the coolest guy in line at the express checkout asking for three packs of rolling papers - pointing out that I don't smoke cigarettes, these are for my drugs - and I'm just experimenting of course.
RJM
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.
UBOB