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Probiotics for UC: Two doctors disagree!!

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Posted 8/4/2012 7:41 PM (GMT 0)
Hi All,

Great story.  I was seeing one doctor for my UC and asked him about VSL DS (which I discovered on this blog).  He said basically, "Don't bother!"  So I ditched him and made an appointment with his associate (IN THE SAME OFFICE).  After reviewing my case, this new doctor said to me, "Have you heard of this probiotic called VSL? It's been found to be very effective for UC and you can get it OTC."  How about that guys!  So typical!  Anyway, I explained to him that the really effective form of the probiotic (the VSL #3 DS) requires a prescription (which he did not know!).  I convinced him to write the script for me and finally got the stuff today.  It's very expensive but my insurance explained that if I got a 90-day supply, it would be much cheaper.  We'll see how effective it really is and I'll keep you all posted. 

Regards to all!

60 y/o white female

Dx in 2010 w/ UC

Meds: Balsalazie Disodium 750 mg 3 caps/ 3X daily

          Citrucel

          Low Residue Diet (yuck!)

          VSL #3 DS

 

Post Edited (tchrmgr) : 8/4/2012 1:48:00 PM (GMT-6)

Posted 8/4/2012 9:09 PM (GMT 0)
Good for you tchrmgr! Did you know you can purchase regular VSL#3 without a prescription? Also, when you find out, can you let me know how much your insurance covers for VSL#3DS?? I'd really like to get it, but I'm afraid even if insurance covers some it will be twice as $$$$$!
Posted 8/4/2012 9:44 PM (GMT 0)
that's great you got it covered by insurance! i remember i went to pick up my VSL DS script and it was $187 for a 20 day supply. i couldn't afford that so i don't take it, but i'd recommend starting with half a packet a day. i got a lot of gas and bloating the first couple of weeks i took regular VSL, but it eventually subsided.
Posted 8/4/2012 10:20 PM (GMT 0)
The last time I sat in my GI's office I said the very same thing , imagine what didn't opion or care u can get in the very next room !
Posted 8/4/2012 10:49 PM (GMT 0)
Thanks, everyone, for your replies. Here are the details for the VSL #3DS: I had first received a supply of 20 packets for a whopping $90.00. I callled my insurance company (CareMark) and they said that if I could get another script for a 90-day supply it would substantially reduce the price. I did and the 90-day supply turned out to be $50.00. That's a much better deal.

The label says: "Take as Directed" but the doctor never told me how to take it or how much. I'm going to start with 1 packet a day, mixed in cold water and see how I fare. I'm a bit nervous by what banangirl said about the gas and bloating so we shall see what we shall see!
Posted 8/4/2012 11:56 PM (GMT 0)
Sounds good, I hope a few members chime in, because I'm pretty sure 1 VSL#3DS packet = 2 VSL#3 capsules. Good luck!
Posted 8/5/2012 1:14 AM (GMT 0)
Didn't know that.  If that IS true, how many of the packets should I be taking per day?
Posted 8/5/2012 1:57 AM (GMT 0)
i started out with 1/4 a packet a day of VSL#3. i can't remember the amount that is in a whole packet (450 billion?) i worked up slowly because the gas was pretty noticeable. i looked pregnant, too. i think it's because the probiotics i was taking before were only 1 billion bacteria. i'm assuming the VSL#3 DS is 900 billion so that's quite a bit if you generally don't take probiotics. i know there's trillions of bacteria in the colon, but i still think you should introduce it slowly.
Posted 8/5/2012 2:12 AM (GMT 0)
Does this stuff work for you? I have not had any sort of supplement work for me to any decent degree, but am always open to trying stuff.
Posted 8/5/2012 12:23 PM (GMT 0)
Probiotics are very effective for most of us but individuals vary over specific brands. VSL#3 works for me but I find that Mutaflor and several capsules per day of Culturelle are just as effective.

VSL#3 has the advantage of being endorsed for imagardener2 which might mean something because she usually does not find any supplements to be helpful.
Posted 8/5/2012 1:04 PM (GMT 0)
My 14yr old son takes 3 x 450billion Sachets pr day, we started by splitting the first sachet over three days,. then the next over two days, then one a day etc etc eventualy getting up to three sachets a day.
He did not have any trouble with extra wind, that was already there before he started!
Posted 8/5/2012 7:12 PM (GMT 0)
2 VSL capsules = 225 billion probiotic bacteria

1 OTC Sachet = 450 billion probiotic bacteria

1 DS Rx Sachet = 900 billion probiotic bacteria

I started with 1 OTC Scahet a day for a month (450 billion) and moved to 2 DS Rx Sachets (1800 billion) when my GI prescribed it for me. I never had a problem with gas or bloating; I guess that is a very individualized thing.

BTW...my GI was not familiar with VSL either when I first spoke to his nurse. As a result, the nurse set up a meeting with a VSL Rep for the GI's entire office staff to educate them about this medical food. He now prescribes it to patients on a regular basis. I think you have to remember, most of these GI's are inundated with patients and proceedures. Not to let them off the hook, but sometimes I think the people in this forum do more research than the practicing GI's who are putting in 12 - 16 hour days...but, then again, many people here seem to have the time. If your GI doesn't know about VSL, help educate him/her.

Posted 8/6/2012 2:15 PM (GMT 0)
I had some initial gas, and even a bit of smelly diarrhea. This seemed to be die of of some of the bad bacteria as the VSL recolonized. If I take 3/4 DS packets a day I still get some gas. There was also more initial stool production then there is now. 1/2 of dry content of stool is dead bacteria. Once the colony wars and die off was over, there was less noticeable stool improvement.

Still, I have fairly loose semi-formed stool now after 3 years of totally liquid diarrhea. Still have moderate blood too. I can see VSL helped me, but unfortunately not one of the people who got complete remission.
Posted 8/6/2012 5:58 PM (GMT 0)
if you get a prescription you can use FSA $.
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