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VSL#3DS Dosing

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Ulcerative Colitis
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Posted 6/20/2011 1:39 PM (GMT 0)
about to order VSL#3DS through my pharmacy (as it is covered under my insurance).
Why do they come in packets of 20? Is that supposed to last a month? Or, is it one packet per day?
Posted 6/20/2011 1:52 PM (GMT 0)
I don't know why there are 20 packets to a box.

In a flare, I believe the recommended dose (shown to work in whatever the trials were....) is 4 packets a day.

I tried that and I believe it helped.... then I started to run out of VSL and cut back. (Need to call my GI and get a new prescription to allow me 4 a day!)

In remission, my plan is to cut back to 1/2 packet a day. I haven't been solidly enough in remission these past 8/9 months to try that yet
Posted 6/20/2011 3:18 PM (GMT 0)
when I take VSl#3  a half pack I get bloating and pain, then I feel like I have the flu 4 to 5 hours after, could it be killing off the yeast I have? Some probiotics make me feel terrible and give me the runs! Anyone have this problem?

 

Posted 6/20/2011 4:23 PM (GMT 0)
That is great it is covered by your insurance. My daughter takes the capsules - 2 on most days and up to 4 if she feels she needs it.

I have heard that for some, it can take a few days of your body re-adjusting when you first start taking it. Maybe cut back on the dose for a few days?
Posted 6/20/2011 4:50 PM (GMT 0)
EPH,
I think the recommended dose is 2 packets of VSL#3DS per day (1800 billion probiotic bacteria per day) when flaring and a maintenance dose of 1 VSL#3DS packet per day (900 billion probiotic bacteria per day) when not flaring. The key here is to get the correct number of live probiotic bacteria in each dose.

My understanding of the bacteria counts:
VSL#3DS 900 Billion (each sachet)
VSL#3 450 Billion (each sachet)

The DS version contains twice as much per sachet as the regular sachet and is prescription only. I also believe that you should probably start slowly and build up to the 1800 billion per day dose. Maybe start with 450 billion administered as 225 billion morning and 225 billion in evening. Then build up slowly to reduce bloating and discomfort.
We mix the unflavored VSL#3DS sachet with applesauce, cinnamon and psyllium seed powder, which makes it taste good and I think it also provides some prebiotic nutrients to help the VSL#3 survive.

We think VSL#3DS has really helped our daughter. The bacteria counts in VSL#3 doses are much higher than most probiotics, which may be why it has shown good clinical results. Everyone is different with this disease, but this is what has helped us.

Hope this helps,
UCPop
Posted 6/20/2011 5:24 PM (GMT 0)
UCPop - We're both right. I just went and looked at the package insert - it recommends 2-4 sachets of DS per day for "Active UC" and 1/2 - 1 per day for inactive UC.

I have never had bloating or gas from probiotics, but other have reported it!
My recommendation would be to start slowly, with a small dose, of any supplement..... and if it doesn't agree (therearemiracles) try another one, or another supp. all together. One thing is crystal clear: we all respond differently.
Posted 6/20/2011 8:09 PM (GMT 0)
I take 1 pkt of VSL#3DS daily in the evening and take 3 lialda in the morning.  It does come 20 pkts to the box, so when I get it from my pharmacy, I get a box plus 10 pkts in a bag.  I only pay 1 copay, even though technically it's 1-1/2 boxes.
Posted 6/20/2011 11:00 PM (GMT 0)
Great!
I think you pay only one copay because it's one prescription. When my GI changed my prescription from 1 a day to 2 a day, my copay stayed the same, even though I was receiving twice as many.
Posted 6/20/2011 11:59 PM (GMT 0)
All probiotics are a waste of money.
Posted 6/21/2011 12:40 AM (GMT 0)
My son was prescribed VSL#3DS as the regular VSL#3 was not covered by insurance.  The Dr wrote a script for 2 sachets (packets) per day so we got 60 packets (3 boxes) and only paid for one month at $30 copay.   My son ended up only taking one packet per day so the one prescription lasted us 60 days.  They have to be refrigerated so they were ok for the 60 days. 

Hope it works for you! Unfortunately, we didnt see any improvement by him taking this and the Dr told us to stop because he ended up flaring while he was on this.  But everyone responds differently.

Good luck!!   

 

Posted 6/21/2011 1:12 AM (GMT 0)

baconeggsyum said...
All probiotics are a waste of money.


haha that's a hell of a statement.

The only time I achieved a remission like state, when not on steroids, was when I was taking 4 packets of VSL DS a day (3.6 trillion bacteria, the amount used in the clinical trials that back up VSL's efficacy).

It's too expensive without insurance, so I had to stop taking it :-/
Posted 6/21/2011 1:42 AM (GMT 0)
Bacon, I can't decide whether I found your statement to be inflammatory, disrespectful or just silly. The forum exists for mutual support, and to write a negative opinion as a statement of fact does not give support to anyone.

And it shows disrespect for those who have found probiotics to be helpful.

And silly.... I mean, in my opinion toilet paper is a waste of money also.... but I purchase it anyway.

badslinke, I think the cost of meds for those without insurance is just horrible.... I'm sorry your choices were decided because of finances.
Posted 7/12/2011 6:39 PM (GMT 0)
Just thought I'd share this recent study that seems to show that probiotics are helpful for IBD:

www.nutraingredients.com/Research/Gut-feeling-New-study-proposes-probiotic-mechanism-for-IBD-benefits

I can also state that, after flaring for about 7 months, the combination of LDN, VSL#3DS, and psyllium seem to have put me into remission.

I would say that, if VSL#3DS is covered by your insurance, it may be worth a try!

Eph
Posted 7/13/2011 5:58 AM (GMT 0)

baconeggsyum said...
All probiotics are a waste of money.

You're entitled to your asinine opinion.

Probiotics have helped me a lot. I'm pretty sure it's the thing that keeps the balance in my intestines. Since I started taking it, I was in remission within a week after a bad flare for a few years.

==========

Eph,

I take four sachets of VSL#3DS daily. Sometimes I forget and take only 3. I'm not going to decrease it to one - ever.

I've had a talk with the people at the manufacturer and they 'accept' what I'm doing with my long history with the UC.

It took some time to adjust to it, about 4 months, starting with a half of dose and slowly increasing the sachets.

As to the 20 sachets, no idea. It's not going to last a month, except if you take reduced doses, which may well be enough for proctitis.

Good luck.
Posted 7/13/2011 12:02 PM (GMT 0)
Eph,

Thanks for posting this article.

Although I would love to take VSL 3# DS, my insurance doesn't cover it, so it ends up by costing me over $300. per month.

So I take my VSL #3 with  slippery elm bark powder mixed in water. This way I am able to coat the whole digestive tract with the slippery elm and get it down into my gut.

Seems to work well this way. I've never found it to give me any gas.


 

Posted 7/13/2011 2:09 PM (GMT 0)
All probiotics are a waste of money

the Moderator said...
I can't decide whether I found your statement to be inflammatory, disrespectful or just silly. The forum exists for mutual support, and to write a negative opinion as a statement of fact does not give support to anyone.


I do not think that the original statement was inflammatory or disrespectful. Obviously probiotics did not help him. Everyone is different. Perhaps he could have been more diplomatic by saying 'for me' afterwards. I do not think this is any worse than the pro-med people on this forum who routinely used to say that diet modification was a waste of time and effort.

You're entitled to your asinine opinion

Now this is a statement that perhaps the moderators should review.
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