Any Luck with VSL#3 Probiotics

My son has recently lost 26 pounds and is in the midst of a current ulcerative colitisĀ  flare up. His Asacol (12 pills a day) seems to have become ineffective in holding it in remission. He is 29 years old. I am afraid the think about what the next step may be. Has anyone out there had any luck with VSL#3 probiotic? Has anyone has the good fortune of having insurance pay for it though a doctor’s prescription?
Thanks!

Submitted by “AM from MN”

 

Some more ulcerative colitis related stories about VSL#3:

VSL#3 Use

Gut Bacteria and Probiotics




Ulcerative Colitis Tips


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16 Responses to Any Luck with VSL#3 Probiotics

  1. Sarah May 17, 2011 at 3:09 pm #

    I’m curious about the same thing! I’m on Remicade but I just started on VSL#3. Can’t wait to hear how other people like it!

  2. Richard (UK) May 17, 2011 at 3:28 pm #

    Hi, I can not answer your question directly as myself is in the same position as your son and im also 29. Have had UC for 5 years now this year and part of last year since august I have been in a flare, If I am like your son trying to tackle this without the strong meds that have side effects (steriods ect) It is very hard to tell what works, I do take a probiotic and I don’t think it works but after reading this guys post https://www.ihaveuc.com/healed-from-ulcerative-colitis/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+UlcerativeColitisRecognizingItDealingWithItDietIsImportant+%28Ulcerative+Colitis%3A+ihaveuc.com+stories%29

    I like the way he layed out his probictic’s and not just taking 1 at any time of day, also he is taking different types. It is all over my head what is in those and I fail to understand what we UCers need from them. However you just can’t ignore how some people get cured or miles better from them.

    Right now I have ordered some boswellia resin based on a story I heard how it helped some guys flare stop.

    Next step for myself is to try more probiotics and yes VSL is high on my list to try.

    I keep searching for a top ten list of ways to get out of a flare, the problem is most people as bad as your son go directly to the strongest drug. As I said before if he is stubborn like myself then those nasty drugs are not an option even in dangerous weak conditions.

    My last option I will try some slippery elm heard how it might help lining the colon or such.

  3. Kathy p May 17, 2011 at 3:43 pm #

    In the autism world where many kids have gut issues, VSL is used with good results. My 7th daughter hAs been on 3 double strength pAckets a day. My colitis husbAnd used 3 double strength packets. Day during flare up with success.within 24 hrs be noticed a decrease in stool frequency when added to his low residual diet during the flare.

    The package insert for VSL#3 DS says 1/2-1 sachet a day for UC, active-not responding to conventional therapy- says can use 2-4sachets(packets) a day. VSL#3 DS is only by prescription and my insurance covers it. U need to tell ur dr u need the script and tell them how to write it. VSL#3 DS 1sachet 3 times a day. That way u have enough for the flare for a month. If u don’t get the o
    Prescription strength, can order sachets from company but need to double dose. 1 DS packet=1 non prescription sachet. The capsules are not as potent. All this info is on VSL web site too.

    Good luck.
    Kathy p- lady with a fridge full of VSL-

  4. j May 17, 2011 at 3:45 pm #

    It seems to be effective for me. I use Asacol and following the SCD diet. It is good to use all of the tools that are available to control this disease. I buy it at a local drug store. I know that some Costco stores sell it.

    I think it is worth a try. It is pricey.

  5. Vicki Thomas May 17, 2011 at 4:03 pm #

    I was taking VSL#3 when I was living in Belgium – it is very cheap to buy there. But now that I’m back in Canada I’m no longer taking it. Hard to know if it worked for me since I was also on Imuran and Asacol at the same time.
    I know there is a professional bike racer who only takes VSL#3 and he is racing in the professional ranks doing very well. He also eats a diet that is free of fruits and vegetables – ie. very very low fiber.

  6. Kristin May 17, 2011 at 5:36 pm #

    I’m currently taking it and I bought it without a prescription, although I’m using it with my doctor’s knowledge. I always feel better when I take probiotics and I really think there’s a connection between UC & gut bacteria. I think VSL is working for me as I feel better than I did a few months ago when I was in a flare. I hope it helps you!

  7. Molly May 17, 2011 at 5:39 pm #

    I have been taking VSL 3 for the past year and I’m doing the SCD diet. The combo of the two is really working for me. Good Luck!

  8. Chris October 18, 2012 at 6:34 am #

    I started taking VSL 3 about a year ago and immediately noticed improvement over my previous asacol regimen (9 400MG tabs a day). I take 3 packets a day and only occasionally have a little blood in the stool, otherwise I am quite regular. Was paying $600/month for asacol ~ $190/month for VSL3, so it’s a no brainer.

  9. joanna October 18, 2012 at 8:21 am #

    i was taking VSL for about 1 year. i never noticed it helping but it never did anything bad either. just like taking a placebo. i had to stop it when i started SCD since it’s not SCD legal.

  10. karen January 30, 2013 at 12:15 am #

    I developed UC at the age of 14yrs, and lived fairly well until I was 4o then I had some really bad flair ups, the last one was so severe that I had to have the proct-colectomy. Soon after surgery I developed ‘pouchitis’ which was very uncomfortable. Then my Gastro put me on VSL3 and I have been stable for 9 years now, if I try to stop it I get pouchitis again, so it really works for me. I wish I had known about it before the prococolectomy it may have helped and avoided surgery – who knows, but I am so pleased that I dont suffer anymore.
    Currently Australia has no supplies – so I am trying elsewhere, here in Oz it costs me $130 per box, my insurance etc wont pay for it.That is the drawback – at the moment I can afford it but it does concern me that it is so expensive – maybe I should move Back to Europe!

  11. MIKE RICCHIO May 7, 2014 at 10:24 pm #

    I have been taking vsl3 for several years with great results I don’t know why it doesn’t work for everyone but is a miracle for me.I would not be able to work or do many normal activities.Unfortunately I have just been told that I can no longer purchase it directly anymore instead I have to go through a pharmacy or a naturopath.

  12. Nicole March 2, 2015 at 6:05 pm #

    I recently purchased four boxes of vsl#3 through my insurance. Unfortunately, it didn’t work for me. Now I have three and a half boxes that I don’t need. I hate to throw them out when they are so expensive. I would be happy to send them to someone in need, free of charge. (I kept the styrofoam box and ice packs they were delivered in.) I don’t know how to go about it, but please leave a message here first if you’d like me to send them to you. We can figure it out from there.

    • Nika March 16, 2015 at 3:33 pm #

      Hi, I would love to take you up on this offer–how do I?

  13. Nicole March 27, 2015 at 7:28 am #

    Sorry for the delay in my response. My email account put this email in my spam box and I just found it. If you want, you can email me directly: NicEastman@aol.com. Please just mention the probiotic in the subject line.

    Thanks,
    Nicole

  14. Jenny April 8, 2015 at 7:51 am #

    Vsl#3 works awesome. I have had chrones diease for 20 years now had emergency surgery 5 years ago when I ended up with a bladder fistula and had no other choice. I have tried every medication availble and was getting tired of the side effect and everytime I when to the doctor for other health issues they always blamed everything on medications. The other medications only ever worked short term I seemed to build ammunity to the medications after a year or two.
    After my surgery my surgeon promised me I would have another surgery within 2 years that was always the way it worked. I decided to quit all other medications and start taking Vsl #3 I took 2 packs every day with vitiams and if I missed a dose I felt it the diarrhea and stomach pain would be back. three years after surgery I had a scope and my surgeon was amazed there were only 2 very small ulcers and very little evidence of chrones diease he said whatever your doing is working don’t stop. We have added a very low dose of mezavant to my daily medications just incase. I have never felt so good on vsl#3 and it was so nice to not always be marking out where the washrooms are when you go somewhere.
    The cost of vsl#3 is high in Canada but well worth the benifits if you can afford it.

  15. Gina July 13, 2015 at 3:13 pm #

    Thanks for these responses. I was just watching a video in my GIs office and it was promoting the use of VSL3 and ecoli nissle.

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