Hi all. Whew. It’s been a busy month. I finally have a chance to sit down and type an update on what’s been happening lately.
When I first made my introduction post…I was quite discouraged with the quality of care my husband was receiving (in regards to both PSC and UC), and was looking for some good, helpful information to move forward with.
A big thank you to all I have spoken with. You all are so informative…and truly life savers. Like I’ve stated before, I learned more from the folks on this site than I had from any of Steve’s doctors in the 6 years we’ve been dealing with all of this.
We were at a crossroads in regards to Steve’s care. Since he’s been diagnosed with UC about 6 years ago, he has yet to find a medicine that helped him feel better. He tried every medication available on the market…some made him worse…some made his symptoms somewhat better, but none have ever brought his high inflammation down. And he’s still had to deal with annoying symptoms such as gas, urgency, stomach pain…his trusty prednisone wasn’t even helping with flares any more…wasn’t even touching them.
He was diagnosed with PSC almost 3 years ago…and while I’m thankful he hasn’t shown too many side effects from it yet, he does have elevated liver enzymes and slight progression shown on scans.
We were seeing a GI dr and a Hepatologist at Phoenix Mayo who we weren’t too pleased with. Every decision they made left us uncomfortable and in my opinion they were making Steve worse.
Through this site, I was told about Dr Keith Lindor at Phoenix Mayo. Obviously I had heard and read a bit about Vancomycin and was told he was involved in a lot of studies around the use of Vanco as a treatment for PSC.
Steve’s current hepatologist he was seeing had no interest in prescribing Vanco after we had asked.
Out of desperation, we sent a message to the Hepatology dept requesting an appt with Dr Lindor. My husband was nervous that we might offend his current dr by doing this. Oh Steve…you’re too nice. IM NOT.
We were denied the initial request. Being told that Dr Lindor was retiring and they dont like current patients seeing different doctors.
Fast forward a couple weeks later, we get a random voicemail from someone at Mayo letting us know that Dr Lindor has agreed to see Steve. Imagine our surprise.
Fast forward to appt time…we see Dr Lindor. At first he was only interested in prescribing Urso for Steve. But after we spoke more about the trouble Steve was having with his untamed UC, he thought it might be worth a try to prescribe Vanco because of its possible beneficial effects on the colon as well as the liver. Basically…it was worth a shot, right?
We got a prescription for VSL #3 DS from his GI dr as well. So we picked up both prescriptions at the same time.
BOTH these prescriptions can be very pricey. We were pretty nervous about how much we’d have to pay when getting them. In the end…we paid $10 for both…we were so happy.
A tip, when the pharmacist first put the prescription for Vanco in the system…it was denied. But she changed the 60 day prescription to a 30 day with 1 refill and it went through fine. $10 copay.
Same thing with the VSL#3 DS. They switched it to a 30 day supply, and with the coupon we printed out from the wesbite… it ended up not costing us anything.
This may not be the case for everyone…depending on your insurance. But some tips regardless. We have United Healthcare.
Anyways. Steve’s prescription is for 1000mg of Vanco daily. He takes 2 pills in the morning and 2 in the evening. He takes one probiotic packet in the afternoon with blueberries and yogurt.
Let me tell you…not even two days after starting these, he was already showing improvement. Fast forward a month later…he’s having regular bowel movements that don’t bomb my poor bathroom, less urgency, rarely any gas or pain. He told me that no other medicine he’s tried in 6 years has made him feel this normal. I’m definitely crediting the medicine at this point…because when you’ve been trying everything under the sun for this long, you KNOW when something is making a huge difference.
Our next step is to have a follow up appt for blood tests and scans. We recently moved from AZ to the Chicago area, and Steve has an appt with a new hepatologist at Northwestern next week. I’m hoping to see some improvement in his numbers. Honestly though…even if the liver numbers haven’t changed, it would be great if he could stay on this even for his UC alone. It would be nice to avoid going on another liver stressing biologic that probably wont be very effective anyways.
I should add that I think Dr Lindor is officially retired now, so we probably won’t be following up with him at all. But hopefully the doctor we see at NW will be open to its effectiveness and be willing to keep Steve on it.
I will post an update after our appt and let everyone know specific numbers and results.
Because of our move, I don’t have my computer set up yet. So I typed all of this on my phone. My fingers hate me now.
Have a good day everyone.
Hi all. Whew. It’s been a busy month. I finally have a chance to sit down and type an update on what’s been happening lately.
Great to hear.
Btw, since you used both VSL and Vanco, we don’t know if both are needed. In anycase, great news.
I can also vouch for the effectiveness of VSL#3 (with blueberries) for UC.
I have him eat the yogurt with blueberries because of someone’s advice on a discussion posted on this site. Maybe it was you Ted. I dont know, lol.
Even if both aren’t necessary to take together…I figure the extra boost of probiotics can’t hurt anything. And I like to sneak half a packet here and there. Muhahaha. Shove it Activia!
Thank you for your detailed post. I believe the information you provided will help some of our other patients who have both UC and PSC. From the different posts I’ve read on the use of Vanco, I’m getting the opinion that most of them have UC in addition to the PSC more than just PSC alone. So glad your husband is doing better. I wish you both well in this ongoing quest.
PSC 2011 / Liver Transplant 2015
Glad to hear that Heather! I had the exact same experience with another doctor at Mayo in Phoenix. But, I’ve been in contact with multiple people who have not been able to get a vanco-prescription from Mayo in Rochester.
Mark, I think the reason there are more posts regarding vancomycin from the PSC/IBD crowd is because a substantial majority of the community has PSC/IBD vs. PSC alone. Also most of the clinical trials have used lack of IBD as an exclusion criteria in an effort to homogenize the pool of patients. I just want to note that the treatment does work for non-IBD cases as well.
In the non-IBD cases does the patient always have UC or are some of them just PSC with no UC or IBD issues? I have been a bit hesitant on speaking much about vancomycian as I am “wondering”, have no data to prove either way, wondering if the vanco only helps PSC symptoms but doesn’t do anything to slow the progression of the disease. I don’t know the answer to it and neither did one of my hepatologists have one when I asked him back in April. He just stated that more study was needed. If, and I only say if it is only helping the symptoms, I don’t want folks to get a false hope that the devastation and end result of PSC has vanished and they are going to be cured because they feel better. I’m just wanting to err on the side of caution. I am certainly open to hear more about this subject but I do think clarification needs to be clearly made to our forum members whether this is just quality of life vs a real possible cure. Just some things for us to consider. Again I have no real opinion either way on this.
In no way do I think Vanco is going to cure Steve’s PSC. I’d just like to state that for the record.
We got to the point where his UC was so bad that even his GI dr had no clue what to do with him anymore. But no one wanted to even humor a discussion of getting his colon removed.
I wanted to put this post out there for those that might be like my husband. One of those difficult cases. Maybe not in terms of PSC, but UC.
As far as Vanco goes for PSC…if it helps with symptoms along the way…heck…if it slows progression down even slightly…I’m all for it.
If all Vanco is doing is giving me hope…then I’m all for that to. Sometimes that’s all we can run on.
It’s making my husband feel better…so I can speak for that. I’m definitely not out to give people false hope, because with proper research, you can see that it doesnt work for everyone. I was well aware of that before we got it.
But it never hurts to share experiences for those curious…and heck, encourage them to talk to their doctors about it.
Please don’t take my last comment as any sort of disparaging remark about your post. I really appreciate your post and shared it with another person that contacted me recently from my own state of NC looking for a doctor that would prescribe Vanco. My remarks stemmed from over a year of many on the forum discussing in minute details about the use of vancomycian. I’m all for it helping in any way it can. It’s hard to put heart into words sometimes. I’ve talked about having hope on this site for many years. That’s one reason I have been so hesitant to comment at all. I just want us all to be wise and while we are hoping and using vanco and it’s helping our symptoms, to not let up on regular labs, MRCP’s, ERCP’s as needed to keep a close eye on the disease progression.
My MELD went from a 12 in January '15 to a 36 in July that same year. This is part of my burden. Use any and every good remedy that is helping you, but keep a close check on the disease along the way. I hope that came out alright.
The reason for using vancomycin is that vancomycin seem to stop the progression of PSC for people who experience normalized LFT:s after starting the vancomycin-treatment. The oral vancomycin treatment isn’t a new treatment. 30 kids at Stanford (with PSC in stage 0-3) started oral vancomycin treatment in 1995 and not a single one of these patients have had their PSC progress. Some have even had their bile ducts heal to the point were their PSC wasn’t detectable.
Basically, the theory behind this treatment is that the gut flora regulates our immune system. PSC-patients have a different gut flora than healthy people. Thus, if we change our gut flora, the disease progression might be slowed down or stopped.
Vancomycin might help symptoms, but the reason for using this treatment is to stop the disease progression. The problem is that the patent for vancomycin has expired, and thus no pharmaceutical company is going to sponsor any clinical trials on oral vancomycin treatment for PSC.
Thanks for that information. I do recall reading about the Stanford trial in the young patients and how they had good outcomes. When I was diagnosed in 2011 it was never mentioned as a treatment or even possible cure. I wonder if someone had the right connections that the need for it could be pressed under the new law President Trump signed a month or so ago regarding trying experimental drugs in patients with life-threatening illnesses. I’m not sure if it would qualify under the terms of that but it would certainly be worth looking into if doctors are refusing to prescribe it and they can’t give a reason why other than it’s not listed as a class of drug for treating PSC. May be worth researching.
Oral vancomycin is not a cure for PSC – the disease returns when treatment is stopped. Oral vancomycin is a potential treatment for PSC as it has shown improvements in symptoms, liver function tests, and in slowing or stopping disease progression. Treatment results vary: some patients see no improvements, other patients have quality of life improvements but experience disease progression, and still other patients see no progression or even improvements on their imaging tests over time.
Anecdotally, vancomycin appears to resolve PSC for patients independent of their IBD, to include patients with PSC-UC, PSC-Crohn’s, and PSC without IBD (though, as noted above, not in all cases). Studies tend to omit PSC patients without IBD (UC, Crohn’s) to homogenize the patient pool. This doesn’t mean that the treatment doesn’t work for PSC-noIBD patients; it just means that study data for this population is thin. As a bonus, the treatment may resolve IBD as well. For some patients both PSC and IBD are resolved while others see a benefit for only PSC or only IBD.
Existing studies are low powered and, in the case of pediatrics, lack control arms. Larger studies, of the type necessary to get PSC on the label of the drug, are unlikely to happen. Most of these large studies are funded by the drug company. In this case, vanco is an old drug without patent protection. The rights holder has articulated that it has no financial incentive to provide the drug let alone fund such a trial. Public funding is a struggle, among other reasons, because our small, diffuse population makes research expensive and a comparatively bad investment.
Doctors don’t know about the treatment because they don’t spend a whole lot of time keeping up with PSC research for their rare PSC patient. Of my 5 hepatologists, only one was familiar with the PSC clinical guidelines, never mind trial details outside of the infamous high-dose urso trial. Doctors don’t trust what they don’t know. Many doctors are receptive to the treatment after being briefed and presented the existing research.
You are absolutely right that we all need to keep a close eye on the disease. Even without symptoms and with normal bloodwork, any history of bile duct inflammation and fibrosis means cancer is a very real risk. I’ve been asymptomatic for 5 years, but I still get MRCPs done every six months and would recommend at least yearly imaging for anybody with PSC.
The “right to try” law in question allows critically ill patients to sidestep FDA approval in order to access new drugs that are in the pipeline. The law actually has no teeth because the hurdle was always the drug companies that have no obligation to supply these drugs to critically ill patients. In any case, we are in a different place as vancomycin is FDA approved; we are simply taking it off label, similar to urso.
Thanks for that good presentation JTB. Very well said. Thanks also for the clarity on the “right to try” law. I wonder if someone among us could draw up some sort of letter that we could send to the White House or to our members of Congress to allow for off label drug usage such as Vanco to be used such as for PSC treatment. I’m sure this treatment our patients needs is worth considering such an amendment to this law. Just some food for thought. Anyone with ideas on how this could be done is certainly a welcome topic to discuss.
To clarify, prescriptions for off-label drug use are legal and common. In fact, this is how you were able to take urso for your PSC. Urso is FDA approved to treat PBC only, but this doesn’t stop doctors from prescribing it for PSC, gallstones, or for anything else. Similarly, there is no legal hurdle stopping a doctor from prescribing oral vancomycin for PSC. Our interrelated issues are that of awareness and money. The ultimate systemic problem is that there is no clear path to FDA approval without drug company involvement.
Again JTB, thanks for your clarification. I’m glad we can learn from one another as we continue to battle this disease called PSC. No one person can have all the answers thus this community has been an asset to all of us. I’m still learning more even 3 years post-transplant. Thanks for your contributions to this PSC community.
It is kind of shame that Dr Cox did not seek patent protection for his Vanco for PSC finding. I believe that would have been possible and patentable (the fact that Vanco was known was not a barrier for Vanco for PSC patent).
Patent protection would have provided enough security for somebody to spend the money and seek FDA protection…Instead, here we are 25 years later lamenting of progress in Vanco PSC research and FDA approval…
As I understand it, a new method of use patent would prevent generics from marketing this new use and would keep it off generic labeling. Practically, this is a bit toothless as the generics are still readily available - everyone is still going to buy the cheaper generics and use them off label (or the order of magnitude cheaper IV vanco).
What’s interesting is that we didn’t have any pill form generics on the market until 2012, despite there being no patent protection. This was due to heightened FDA testing requirements for vancomycin generics based on studies noting generic therapeutic equivalence issues. Nobody bothered with this expensive testing for pill form generics given the comparatively limited market (narrow use cases and IV vanco was a perfectly viable substitute). When this rule was relaxed, the floodgates opened.
Thank you for posting about your husband’s experience of getting relief from UC using Vanco. I am glad he is getting relief from every day struggle of dealing with UC. This site has been a valuable resource for our family too.
I am wondering if the benefit is solely from Vanco or if “VSL+ blueberries” are also playing a role. My son (adult) is struggling with his UC as well and has been trying all the medications available but none are helping. Some meds helped somewhat for a short while but then lost their effectiveness. He is trying Vanco now with the hope that it might help his UC but, so far after two weeks, he hasn’t seen any improvement. He is on prednisone as well and wants to reduce it. Could you tell me what brand of Vanco your pharmacy is filling? My son is taking the one that Firvanq provides. From different posts it seemed like for UC, brand of Vanco wasn’t an issue, however, for PSC it seemed to make a difference. May be I should ask him to try blueberries with probiotics too. He wants to try Xeljanz next.
Xeljanz. Yes, that medication was brought up in our last appointment with Steve’s GI dr.
That was our next option before we went the Vanco route with fingers crossed.
I checked his prescription bottle and it says the mfr is Alvogen Inc.
He gets it filled through CVS Pharmacy. Same with the VSL.
We got current blood tests results which I’ll post shortly.