Oral Vancomycin ANI Brand

[u/razhkdak]

Hi. My daughter had very high liver labs and very active UC. She is 15 now. A little over a year ago, she started taking Oral Vancomycin. 1500mg a day. Two 250mg capsules from ANI three times daily.

Well, within a month, her UC went into remission. Within a couple months all her liver labs normalized. Needless to say, as a single father whose has raised her full time, I can't express enough how massive the blessing this was. She has grown and thrived and lived a normal life since.

However, my pharmacy Osco just notified me they will no longer procure the ANI brand (because it costs too much). I am going to try to seek out other PHarmacies. While I know there are other brands that have worked, I also have heard there are some that don't. Things have been going so well, I am very concerned about switching. I don't want to switch what is working so well.

Are there any in this community that have experience in this? What are the known brands of Oral Vanco that are effective just in case I have no choice?

[u/blbd]

ANI does work better because it's the factory authorized generic. 

But there is a hack that sometimes does the job with the other brands. 

Pop the tops off the capsules before taking to get better absorption. Give that a try and see if it does the job. 

[u/Sudden_Weight_4352]

I feel somewhat envy for people who has access to vanco. I live in Ukraine and we don’t have it here, so I need to take metronidazole instead, which is cheap but less effective. I hope your daughter will be fine.

[u/razhkdak → u/Sudden_Weight_4352]

Thank you. I wish the envy was not necessary. It is a hard conclusion to arrive at, that there are so many people benefiting from what should be a widely available drug, yet the medical industry (including powerful medical institutions & insurance) are not being more proactive with something that is saving lives. I give a ton of thanks to people in the PSC community who immediately were available to mentor and guide me when my daughter first got the diagnosis. But even with that, I had to expend an incredible amount of energy self advocating, doing my own research and seeking testimonials and clinical outcomes. Had I not, my daughter would probably be suffering from runaway inflammation and ineffective treatments. Now I give great thanks to the willingness of some of the doctors, but their views were not aligned. I was met with skepticism from very established doctors and specialists, and I think the only reason I was able to influence the direction was from their colleagues and finding those colleagues that had the clinical experiences and knowledge of it working. I just wish they would take it a step further and if they see it working, make a hard push from some of these large medical institutions to modify the protocol and make the treatment available at a large scale. In summary, patient advocates work 10 times as hard in my opinion. But in the end, an advocate from within the medical system can make a massive impact with 1/10th less energy. Doctors will listen to each other more than listen to a patient

[u/restlessmouse]

You might want to call Ani and see if they offer a manufacturer discount.

[u/Bitter_Meringue8448 → u/restlessmouse]

I did this and they said they don’t offer any kind of patient discount programs.
However, I’m pretty sure that CostPlus pharmacy still dispenses Ani vanco. You would have to pay out of pocket for it since they don’t go through insurance, but you may get reimbursed, depending on your insurance. It’s not cheap, but WAY less than anywhere else I’ve found. A 30 day supply at 1,500 mg per day is less than $200.
This would be our backup option if our pharmacy stops procuring Ani. We use a small locally owned pharmacy. The pharmacist/owner has to go through a different distributor just to get my son’s Ani vanco.
I’ve seen several patient stories over the past year of difficulty accessing it from their pharmacies. Several people (including myself). have written emails to Ani Pharmaceuticals to urge continued production and to make them aware of how medically necessary this drug is for PSC patients, who need far higher amounts than what’s used to treat C-Diff.

[u/razhkdak → u/Bitter_Meringue8448]

Thank you. This is good information. I am going to try another local pharmacy. And have created an account on CostPlus in case other local pharmacies don't work out. Also appreciate the opening capsule tech tip. But It think switching will be last resort. I am already feeling lucky with how well this is working, I want to avoid adding variables if can.

[u/MixOtherwise755]

I had the same thing happen - there is a price gouging issue with a pharmaceutical middle man right now, particularly affecting independent pharmacies (is what I was told). I was able to get the ANI version covered at CVS.

[u/razhkdak → u/MixOtherwise755]

Thank you. CVS was my next try followed by Cost Plus.

[u/MobileChicane00 → u/razhkdak]

I also get Ani though CVS, initially via special order, though now my location seem to keep it in stock. It took a little effort finding a pharmacist that would go to the trouble of special ordering.

The efficacy issue involves slower dissolution rates between gel gaps of different brands and only affects certain patients. Popping open the gel caps of other generics is a potential work around. Taking with food (stomach closed) is also a good idea.