Probiotics for pouchitis - VSL #3

Lots of folks here use it. I’ve had success with a very high dose (4 packets per day). Some folks are able to get insurance coverage for the prescription strength (which is what you’re using).

Thank you for the reply. I am taking 2 packets currently and seeing some improvement. I’m especially glad to hear that some insurances cover it as I assume it’s rather expensive. My doctor was able to hook me up with samples to start with. 

It’s pricey, but most probiotics are at a dose like that. Two packets per day would cost about $325-$350/month at my CVS

😳 Yikes! That’s a car payment!

After my insurance, a $45 discount card for VSL, and GoodRx card discount, pharmacy still wants $124 for a 20pak. 

Is there something over the counter that can be purchased that doesn’t cost so much? 

This is ridiculous ... 

i found an old VSL article saying they have programs for people that can’t afford it, but the date on it was 2012, and the website today doesn’t show signs of that program. 

Im going to email them and see later .. 

I saw that “patient assistance program” on the web as well. I called the number but the recording asked for your message and your “Nord ID#” as if it was only for already established patients. I did leave a message but no call back yet. A 30-day supply at my pharmacy even with Good Rx is $376. 😔

It was hard work to get my insurance company to cover it based on medical necessity, but I think it was worth it.

I don’t know the first thing about how to get them to do that... especially since I’m in a state program. 

I think I’ll visit my pharmacy and ask for a generic referral ..  

Mamaswans, the first step might be to just call them up and ask how to appeal. This really would need your doctor’s support.

JeremyH, one thing to look for in a bacterial probiotic is CFUs per dose. CFU stands for “colony forming unit,” and it’s just a fancy term for a single live bacterial cell. The prescription-strength VSL has 900 billion CFUs per packet. SInce there’s no real generic equivalent, and almost no regulation, you can at least use CFUs as a way to roughly calibrate how much you’re taking.

I did find an $80 coupon so that gets it under $300. That’s a start for this first round. Thanks for the info. 

Hey Scott .. thanks 

I considered checking the shelves to see what I could find .. I’m certain since I was prescribed VSL900 I’m looking at the highest pricing 

I would also like to know. It’s back ordered at cvs for a month. The other option — visibome ( also 900 billion)—is also out of stock (just as $$) I took it for a month after finishing antibiotic. It may have extended  me from getting pouchitis so soon. 

 Well… Just got out of the pharmacy and the manufacturers coupon did not work. Not sure why the pharmacy tech just said it would not go through. Frustrating. But $376 is better than $470.  If anyone tries the manufacturers coupon and it works, please let me know! Maybe they just type something in Wrong. 

I’ve had my pouch 5 yrs 

pouchitis once a year so far 

just finished my Flagyl and want the probiotics to keep the itis away .. 

Is VSL even available in Canada anymore? I just tried buying more and the websites been shut down to Canadians... was this not a Canadian company to begin with? 

I don’t know about Canada, but it’s very hard to get in the US right now, though it can be ordered from the manufacturer. I called a bunch of pharmacies, covering all three major wholesalers, and came up dry. I finally may have found it at Sam’s Club - I’ll see tomorrow if the order comes in.

The web site has a small-print message saying it’s intended for U.S. residents only. What message do you get suggesting that it’s shut down to Canadians?

Direct from their website. I'm sure they were a Canadian company too. 

If you google it, they have legal issues for false advertising  

I’m having a hell of a time finding it. I use it and it works well for me. Has anyone found a pharmacy that can get it?

Hey ArmyRob95, CVS here in Texas said they could order it... have you tried them?

CVS ordered it for me last week, but today they told me they can’t get it - their wholesaler has “blocked“ it. I called the manufacturer and was directed to Sam’s Club. I’ll let folks know tomorrow if that pans out.

So I picked up 6 boxes of VSL #3 DS today at the Sam’s Club pharmacy, after failing at numerous other pharmacies. I had to get my prescription transferred from CVS, but that was pretty easy, consisting of asking them to do it. Since the manufacturer sent me to them, they may be replenishing stock. I’m guessing this only works for folks in the US, but post here if you have success (or failures).

The current US distributor is:
Alfasigma USA, Inc.
Covington, LA 70433

I’m going tomorrow to pick up another 30 day supply of samples. Apparently my doctor has a great drug rep...

 I got my last supply from Walgreens, but it’s considerably cheaper at CVS  so I’ll be transferring my prescription to them. My nearest Sams is an hour away...

Scott - if you don’t mind me asking, how much did you pay for it at Sams?

After the $80 coupon on the VSL web site it was about $640 for 6 boxes (120 packets) of DS.

I hope your CVS can get it. Mine thought they could, but after a week turned out to be unable to get any. I suspect that the Visbiome attorneys may have written some strongly worded letters to the wholesalers.

Thank you all for your excellent t information  

looks like I’m going to purchase over the counter