Just wanted to let you know that I just refilled my usual vancomycin oral solution and received an oral solution from ANI Pharmaceuticals (I’ve been using Firvanq previously). It turns out that they’ve released it a couple of months ago (see link HERE).
The price was quite a bit more expenseive ($750 vs $500 per month with GoodRx coupon for 1g/day). I wonder though if the vancomycin in their oral solution is the same as in their pills?
Thanks for posting. Surprised that the liquid is more than the pills. Can I ask how you only pay $750 a month for your pills? What is the coupon you use for? When my daughter graduates college and loses her insurance in August, we’re going to need a new way to pay. She takes 1000mg a day and without insurance, it would cost about $7,000. Thanks for any info.
Hi Joki! I’m not taking the pills. I’m taking the same dose, but in liquid form. It’s $500 for the Firvanq and the $750 for the ANI brand with GoodRx coupon (at CVS). The only thing you need to do is tell your daughters doctor to prescripe an liquid oral vancomycin solution (such as Firvanq) instead of the pills, and it’ll cut the price to one tenth.
So, ANI is now making a formula in pill form the big wig doctors are questioning. The formula is no longer what helped so many of us. (And it seems to be happening with me, as I’ve watched my liver enzymes rise each month since the fall.) It seems a liquid from ANI would be as questionable whereas Cutis Pharma/Firvanq is being used in current ongoing studies and we know people have had luck with it.
Hi Susan! I’m sorry to hear that your liver enzymes have been rising. There has been some rumors that ANI now sources vancomycin differently, but there’s no proof that it’s worse quality. One thing to keep in mind is that the vanco treatment has been more successful in patients with early stage PSC. So there’s no point comparing with other people on the internet without knowing their PSC stage.
Dr. Lindor suggested to me in an email yesterday ANI was worse. That it is now a big unknown. Each bottle could be sourced and formulated differently and not necessarily in the western/European world.
In terms of success with those of us with long standing PSC, the theory is that it just takes far longer than the often three months used in studies to begin to see a change.
We know it took me 2.5 years for my liver enzymes to significantly lower and my symptoms to vastly improve. (For those who don’t know, I have had PSC and associated UC for thirty years before I began Vanco.)
Susan, my understanding is that the concern is about the gel caps rather than the vancomycin formula. Limited testing showed Ani gel caps broke down faster at certain pH (potentially certain people) compared to the other generics. There is speculation, but as far as I’m aware nothing conclusive, that the Ani caps may have changed.
Practically speaking, if everything is working there is no reason to change treatment. If Ani pills aren’t working like they used to, talk to your doctor about potentially modifying your treatment. The easiest thing to try is to pop off the top half of the gel cap before swallowing (also try to take with food to slow things down in the GI tract). Liquid vanco (compounded IV, Cutis Pharma, and now Ani) also gets around a potential gel cap issue, but will likely require a modified prescription from your doctor.
This longstanding headache with pill form vanco is actually very interesting because it suggests that vanco’s mechanism of action in our case is likely way up high in the GI tract. Recent research suggests that our biliary system, once thought to be a sterile environment, has a rich microbiome likely populated via the duodenum. This may mean that we need vanco out of the caps and working just downstream of the stomach.
Thank you very much for the clarification JTB! Another factor is that the bacteria that metabolize bile acids also live in the small intestine.
Blah, it’s all so confusing. Big wig doctors studying our disease are saying ANI formula has changed, I’ve been taking ANI for over two years, before that took Cutis Pharma liquid. I did open the capsules for a few months until someone here told me not to. Over the past two months, the ANI no longer seems to be working as my liver enzymes are rising and my liver symptoms have all returned but for the UC which continues to be much improved. I’ve asked my doctor to call in a prescription for Cutis. I’ll keep people updated.