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tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 7/30/2008 1:36 PM (GMT -6)   
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
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


IndianaUC
Regular Member


Date Joined Feb 2007
Total Posts : 212
   Posted 7/30/2008 1:50 PM (GMT -6)   
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.
- DXed with "left sided" UC in 1998. DXed with "proctitis" Oct. 2007
- Sulfasalazine 4 500mg tabs twice daily
- 500mg Vitamin C, 1 Multivitamin, L-Glutamine
- Max Acidophillis EC Capsules 350Mg(7 types of bacteria with over 42 billion viable cells) with 50 Mg colostrum & 50 Mg FOS(fructo-oligosaccharides)
- Experimenting with this or that on occasion. Always open to new ideas.
- Colonoscopies - 2 (Due for my next one ASAP)


JerryGarcia
Regular Member


Date Joined Feb 2008
Total Posts : 68
   Posted 7/30/2008 3:05 PM (GMT -6)   
Taking lots of VSL#3 doesn't cause diarrhoea at all, perhaps some bloating but that's about it...
DX with UC Jan 07
Currently taking Colazide (allergic to Asacol and Pentasa) 2 a day
Also taking VSL3 X3 a day
Just started LDN 4.5mg


ChiCubs7
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/30/2008 5:32 PM (GMT -6)   
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.
Ken, 24 years old

Seborrheic Dermatitis diagnosed Jul 08 (flaring) - Fluocinonide Topical QHS, Ketoconazole 2% Shampoo TIW
Left Sided Ulcerative Colitis diagnosed Jan 08 (flaring) - 50mg Azathioprine QD, 4 x 1.2g Lialda QD, 5mg Prednisone QD, 1000mg Canasa QHS
Minimal Change Disease diagnosed Feb 06 (in remission) - 10mg Lipitor QD

1200mg Fish Oil BID, 400 IU Vitamin D + 600mg Calcium BID, 2mg Garlic Oil QD, 500mcg Biotin, 150mg Oil of Oregano, 4 x 3g Metamucil Fiber Capsules QD, 2 x VSL#3 Capsules QID, Culturelle HS QW, Nature's Way Primadophilus Reuteri QD


WishfulMA
Regular Member


Date Joined Jul 2008
Total Posts : 197
   Posted 7/30/2008 8:22 PM (GMT -6)   
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.

ulcerative proctitis - march 05 diagnosed
current status - bad flare
colazal - 9 pills
prednisone -40mgs 30mgs, canasa -AM, hydrocortisone enema - PM
VSL#3
fish oil, flaxseed oil, bee pollen/royal jelly & garlic, calcium & vitamin d 2x a day, prenatal vitamin plus extra vitamin c and b12 complex
ACCUPUNCTURE
 


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/31/2008 12:50 AM (GMT -6)   
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.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 8/3/2008 8:00 PM (GMT -6)   
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.
Mild to moderate UC diagnosed May '06, prone to c diff infections
Had UC symptoms since 1999
Allergic to the 5ASA family of drugs
Probiotics 3x day
Multivitamin, Wellbutrin XL 300mg, Prozac 20mg, Allegra 180mg 1x day
Fiber supplement 2 caps 1x day
Currently experiencing a flare due to being in med limbo...
 


ChiCubs7
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 8/3/2008 8:51 PM (GMT -6)   
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.
Ken, 24 years old

Seborrheic Dermatitis diagnosed Jul 08 (flaring) - Fluocinonide Topical QHS, Ketoconazole 2% Shampoo TIW
Left Sided Ulcerative Colitis diagnosed Jan 08 (flaring) - 50mg Azathioprine QD, 4 x 1.2g Lialda QD, 5mg Prednisone QD, 1000mg Canasa QHS
Minimal Change Disease diagnosed Feb 06 (in remission) - 10mg Lipitor QD

1200mg Fish Oil BID, 400 IU Vitamin D + 600mg Calcium BID, 2mg Garlic Oil QD, 500mcg Biotin, 150mg Oil of Oregano, 4 x 3g Metamucil Fiber Capsules QD, 2 x VSL#3 Capsules QID, Culturelle HS QW, Nature's Way Primadophilus Reuteri QD


uc_in_stl
New Member


Date Joined Aug 2008
Total Posts : 4
   Posted 8/4/2008 9:37 AM (GMT -6)   

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 . . .


Dx: UC - Since Feb, 2003
Rx: Remicade, VSL#3DS


NJROCK316
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 8/4/2008 10:42 AM (GMT -6)   
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. 

Socalsd
Regular Member


Date Joined Jul 2008
Total Posts : 100
   Posted 8/7/2008 5:28 PM (GMT -6)   
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.
Prednisone 35 mg a day
Asacol 400mg 4 pills 3 times a day
Mesalamine enima
VSL #3 probiotic


ouchytummy
New Member


Date Joined Aug 2009
Total Posts : 3
   Posted 8/26/2009 2:20 PM (GMT -6)   
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)

Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/26/2009 4:17 PM (GMT -6)   
I took it for 2 1/2 months and it did not work.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 8/26/2009 7:23 PM (GMT -6)   
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.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa/Mesacol suppository occasionally


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/28/2009 7:58 AM (GMT -6)   
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!
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 

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