Started Humira about 3 1/2 weeks ago and seeing subtle consistent improvements. My symptoms I felt prior were manageable, but the scope showed this next step was necessary.

I know the GI won't say, "sure, discontinue probiotics." The best they do say about them is that it can't hurt to take them. Florastor was the one recommended to me and I've taken it religiously the last 1-2 years. It's expensive as heck though, comprising the majority of my grocery bill and I'd like to cut that out if I can.

So, wondering if there are any others with a similar situation and your thoughts.

My diagnosis is either pouchitis or indeterminate IBD with inflammation and ulceration in the pouch only.

Original Post

I’m glad the Humira seems to be helping! Florastor (S. Boulardi) is a yeast probiotic reported to help prevent C. diff. I think unless you are on Cipro or have had recurrent C. diff it may not be doing you much good. The high-dose bacterial probiotics, like VSL #3 and Visbiome, seem to help out with less frequent pouchitis. I take a very high dose of VSL, and I think it helps. It’s more expensive than Florastor, though. I get my insurance company tp cover the prescription-strength (VSL #3 DS), and that makes it more affordable as long as I treat my deductible as a lost cause.

Scott F posted:

I’m glad the Humira seems to be helping! Florastor (S. Boulardi) is a yeast probiotic reported to help prevent C. diff. I think unless you are on Cipro or have had recurrent C. diff it may not be doing you much good. The high-dose bacterial probiotics, like VSL #3 and Visbiome, seem to help out with less frequent pouchitis. I take a very high dose of VSL, and I think it helps. It’s more expensive than Florastor, though. I get my insurance company tp cover the prescription-strength (VSL #3 DS), and that makes it more affordable as long as I treat my deductible as a lost cause.

Thank you, Scott. Yes, I began Florastor when on cipro and flagyl, and continued it while only on xifaxan (now discontinued). I've never had C. diff.

I've previously mentioned to the GI what you stated about Florastor, questioning if there was any point to continuing it or if I should consider a different probiotic now. I got a generalized brush off. They do not want to suggest any specific probiotic and simply say any of them are good/can't hurt. Years back they suggested VSL#3, but are non-committal on that one now. VSL/Visbiome really aren't even a consideration due to insurance not covering it. You've been the only one I've ever heard of who was able to get it covered.

I am a bit confused.....Florastor does put in the finer print that it is yeast based and antibiotic resistant.....But it does not say that this is the only use for it. With so many probiotic options out there, and GI's not really being able to commit on them, I don't know what to do. I take the max daily quantity of Florastor so it gets pricey. I don't want to be taking magic beans.

I'm on Entyvio but I still take my probiotic everyday. I use Align.  Yes, I think they are crazy expensive too, but I use it as an extra tool to help me in the fight against pouchitis.  My budget doesn't allow for VSL#3 and I can't get my insurance to pay for it, so that remains out of the question for me.  

Can I prove it works? No, but I figure it can't hurt either.

Just a thought!

 

Still Standing posted:

I'm on Entyvio but I still take my probiotic everyday. I use Align.  Yes, I think they are crazy expensive too, but I use it as an extra tool to help me in the fight against pouchitis.  My budget doesn't allow for VSL#3 and I can't get my insurance to pay for it, so that remains out of the question for me.  

Can I prove it works? No, but I figure it can't hurt either.

Just a thought!

 

Which Align do you take and what dose? At first glance, it appears the Extra Strength Align would cost a fraction of Florastor. At one point the GI did mention Align, as well.

Still Standing posted:

I just use the normal Align - no extra strength or otherwise - usually the 56 count.  I order it through Amazon and the last batch I just ordered was $43.98.

I tried Culturelle before Align and it worked okay, but I like Align better.

Thank you, Still Standing. I'm going to give Align a try. After discussing with my GI, they agreed it is reasonable to try a different probiotic with my current treatment. It was suggested I go with a colon directed "pill" probiotic, rather than a yogurt probiotic, and see how it goes.

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