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Ulcerative Colitis
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Posted 7/30/2008 7:36 PM (GMT 0)
I asked my doctor about prescribing probiotics and he told me there is one (can't remember what it was but it was made up of letters and numbers) so after reading a few posts about VSL#3 I'm taking it could be that.

Anyway he said that it wasn't for UC patients but for j-pouch patients so wouldn't prescribe it for me (although more than happy to push azathioprine on me).  Can you buy this in shops (I live in UK) or can you only get it online. I would like to give it a try.

Thanks

Posted 7/30/2008 7:50 PM (GMT 0)
I'm able to get it here in the US at my local health food store. Check with your nearest location. If they don't have it then perhaps they can order it for you. I get it in small packets at a price of $3.99 each. I hope you can find it because it does work. It's odd that your doctor would tell you that it's for those with the j-pouch only. Anyone can take it. Just don't take that much of it or you'll have excess D. That is what the health food store owner told me.
Posted 7/30/2008 9:05 PM (GMT 0)
Taking lots of VSL#3 doesn't cause diarrhoea at all, perhaps some bloating but that's about it...
Posted 7/30/2008 11:32 PM (GMT 0)
I order mine online from vsl3.com.

If you're in the UK, you can get it at some pharmacies or order it online from www.vsl3.co.uk/.

I get the capsules, have been taking 8 a day, and have had no problems with D. Everyone reacts differently. I got some gas and bloating but that went away after a couple days.
Posted 7/31/2008 2:22 AM (GMT 0)
On the VSL#3 website you can do a store locator for your area. I pick mine up at a local Walgreens for 39.00. A lot cheaper than ordering off their website. I take 2 capsules in the AM and 2 in the PM. I just had a second opinion with a top Gastro in Boston and he actually recommended it as well...and I have ulcerative proctitis.

Posted 7/31/2008 6:50 AM (GMT 0)
my doc recommended it to me last year during my flare.
said its supposed to be great for those with UC.

too bad it did nothing for me except empty my wallet.

a lot of people do seem to get good results tho.

i had to order it online and im in australia.
Posted 8/4/2008 2:00 AM (GMT 0)
I've been curious about VSL3 myself because my GI told me it could POSSIBLY be a substitute for the 5ASA meds that I'm allergic to. Is anyone relying only on the VSL3 to maintain remission? If so, how much are you taking? The price concerns me quite a bit. If I was only to be taking 2 a day, then no problem, but since their website recommends at least 4/day for UC patients, that adds up quickly. I guess I could use the money I'm not spending on Asacol to get the VSL3. My insurance won't cover pro-bs, but I've noticed that all my supplements and doc appts start to add up quickly.

Thanks.
Posted 8/4/2008 2:51 AM (GMT 0)
Do you just want to take it to maintain remission? They have two recommendations for UC patients. To maintain remission, they recommend 1-2 packets per day. To get a flare under control, they recommend 4-8 packets a day. If you get the capsules, 2 capsules = 1 packet.

I take 8 capsules a day and believe I noticed some improvement. It's hard for me to say much more, though, because I only took it for about a week before I changed some of my medications and supplements I was taking.

You probably just have to try it and see what happens. Maybe start at a lower dosage.
Posted 8/4/2008 3:37 PM (GMT 0)

I'm starting VSl#3DS today.  My ins covers it so my doc and I have decided to give it a try . . .  i have experimented with probiotic before and they seem to help so let's see what rx strength can do.  Couple yrs ago I tried cultured cabbage juice for a week and that really helped but the taste and smell was just too much to handle so I stopped.  I hope VSl#3DS helps the same . . .

Posted 8/4/2008 4:42 PM (GMT 0)
The biggest problem I have found with UC and probiotics unfortunately is that no single person has the same result.  Some say they don't help at all, they somewhat help for some, and some say they're a huge help.  I think it has a lot to do with how bad your UC is and where you're at with it.  If you're having a bad flare then taking something will not seem to have the same postive impact as when you're not.  The VSL can be pricey especially the powder form so people are sometimes hesitant to spend a lot of money on something that may work.  I feel give it a shot and if it helps great and if you think it's not stop after a couple of months. 
Posted 8/7/2008 11:28 PM (GMT 0)
I must have missed this post because I inquired about VSL #3DS in another post. My doctor prescribed it for me it does say on the package for UC and Jpouch patients. The pharmacist had about 6 boxes on hold for me I guess he wants me to take four a day. I was shocked when I saw the bill it was $600 dollars! I only had to pay a small co-pay but I would not be able to afford that without insuracnce. I hope it works. I had two today in yogurt and one last night in grape juice.
Posted 8/26/2009 8:20 PM (GMT 0)
My daughter was prescribed VSL#3 and our insurance doesn't cover it, so been trying to find a cheaper means with no avail! Some one posted if you ask for VSL#3 D, that insurance might cover it being a higher dose? My Dr. is checking into it today and seeing if she can find something cheaper as well for us - times are hard, but must do it for my kids health!

Female Teen - just diagnosed with UC 8/09
VSL #3 Probiotic - 4-6 capsules a day, until remission and then 2/day
Canasa suppository - 1 at night (causing a little dizziness when waking up)
Posted 8/26/2009 10:17 PM (GMT 0)
I took it for 2 1/2 months and it did not work.
Posted 8/27/2009 1:23 AM (GMT 0)
VSL#3 is expensive, but if you can afford it then it is worth a try.

However, if you're not going to take the correct dosage then it probably will end up being a waste of money. Someone wrote in a previous thread on this that it did not work for their D, and they took 2 packets a day. 2 packets a day is for when you're in remission. If you have active UC then you need to be taking 4-8 packets a day for it to benefit you.
Posted 8/28/2009 1:58 PM (GMT 0)
Rio, I guess I was the one who took 2 a day for 2 1/2 months and it did not work. I do not have a typical UC flare, though, no blood etc., just persistent D. I would have thought that it would have helped somewhat after that length of time!
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