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SeasideSpyder
Regular Member


Date Joined Aug 2010
Total Posts : 25
   Posted 8/11/2010 10:11 PM (GMT -6)   
I just received my first box of VSL#3 capsules and took two this afternoon. I am curious to see if anyone else is taking this particular probiotic and how it has helped or not helped any of you. I am REALLY hoping for some great results as I am still flaring pretty badly. I am still taking 60mg of prednisone, 4 Asacol 3x a day, 2 Digestive Advantage probiotics for Crohn's & Colitis, etc etc etc. I did read that the effectiveness of VSL#3 could be hindered by steroids and I am worried that I am wasting a ton of time, money and hope on this because my insurance doesn't cover the product and I'm stuck paying full price for it. Oh yay! To top it off, my GI didn't say one way or the other if the effectiveness would be hindered by the steroids so I guess I am going to have to give her a call in the morning to see for sure or if anyone else out there has had the same question and knows the answer, please let me know. I also started the SCD Diet and have been adhering to it pretty well but still have no noticeable results. I guess it's going to take time especially since I'm flaring. This flare tapered down a bit since I started the high doses of steroids...I went from about 10 stools a day to about 5 or 6 depending on the day. I seem to notice that I go more in the morning and evening and while I have a high dose of steroids in my system, I tend to be fine for the afternoon but sometimes will only pass bloody mucus. Wow! How great is it that I can actually talk about this to other people who understand?! Sometimes I think I bore my husband to tears and I think he gets tired of me complaining but I guess it's just my way of venting because quite frankly, I DO NOT want to live this way FOREVER. I have already considered doing the ileal pouch if my colonoscopy August 23 comes up clear for Crohn's. I was diagnosed with severe ulcerative pancolitis but the GI wants to be sure it's not more involved because I do seem to have A LOT of belly issues on top of the UC. Oh it just keeps getting better and better, I tell you. I will be sure to post what happens and what the results are. I know she's doing more than 30 biopsies. The first and only colonoscopy I had was in February when I was in the hospital and that was only 6 biopsies. So I guess we will see. My insides and I just aren't getting along tonight at all unfortunately. Looks like I am going to have a long night ahead of me. Also was curious if anyone is on pain medications SPECIFICALLY for UC? I currently have Tylenol with Codeine, Darvocet and Vicodin and if needed my doctor was going to write a script for Perkicet (however you spell it). I am not allowed to take any NSAIDS due to the excessive anemia I suffer when I flare. I just bleed CONSTANTLY....every single bowel movement. So these are the drugs that I am prescribed depending on the intensity of the pain involved. Just REALLY REALLY CURIOUS if there's something else out there that I could be taking for the pain.
27 yr old Severe Ulcerative Pancolitis Sufferer
Current medications: 60mg Prednisone weening off 5mg/week, 12 Asacol a day, Ferrous Sulfate, Digestive Advantage probiotic for Crohn's & Colitis, 2000mg Vitamin D, B12, 1200mg Calcium

cantstanduc
Regular Member


Date Joined Aug 2010
Total Posts : 31
   Posted 8/11/2010 10:28 PM (GMT -6)   
most insurances will cover vsl#3ds i think is the perscript ver might be worth looking into.

C_G_K
Veteran Member


Date Joined Dec 2006
Total Posts : 905
   Posted 8/11/2010 11:05 PM (GMT -6)   
The nurse at my GI doc's office always seems to call in VSL#3 450 Billion instead of VSL#3DS 900 Billion and the prescription gets canceled because the insurance says it is not covered (since it is over the counter).Once she calls it in right, everything is copacetic.

From the studies I have seen, only mega dose VSL#3 can induce remission, but I could be wrong.
Pancolitis diagnosed 2003. Subsequent flares limited to left side.
Flare every 2-3 years. Prednisone has cleared up flares until now
Asacol x12 daily Apriso 4 tabs twice daily
Mesalamine enema twice daily.
Probiotics: Primal defense and VSL#3DS
Fiber: Psyllium and "super seed".
Tried Imuran but had allergic reaction and had to stop.

Currently mild flare last 6 months. Limited to Rectum and lower sigmoid. No diarrhea.
Added a cortifoam.
Prednisone 7.5 5 mg (tapering)

napacabs
Regular Member


Date Joined Jan 2010
Total Posts : 90
   Posted 8/11/2010 11:31 PM (GMT -6)   
Seaside Spyder,

Hang in there. I was diagnosed with severe pancolitis 3 years ago. I failed everything that my GI through at me. I finally went into remission with Remicade and SCD. I no longer need Remicade and maintain remission with SCD and VSL#3. You will find wellness again. I remember during the peak of the pain that I couldn't imagine getting through it. You can get through it and you will.

Good luck

cslewis
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/18/2010 7:25 PM (GMT -6)   
I was diagnosed with UC thirteen years ago and after changing my diet, I improved drastically. That said, I still never felt totally "back" and to keep things under control, I take a mesalamine suspension enema before bed. My GI said it wasn't a good idea to use them every night, but I'd rather do that than take the mesalamine orally. This past December I came across Dr. David Klein's book/diet for UC, but I just couldn't live that way the rest of my life, and the raw diet caused symptoms to worsen (blood for the first time in years). I tweaked his diet to what I thought I could handle, but have occasional blood in the one stool I have each day. So, about a month ago, I finally tried the SCD diet and although I have good days and bad days, it seems to make a lot of sense. I think the elimination of grains/potatoes, make s a huge difference.

Finally, I heard a lot about the VSL #3 product a few years back, but as afraid to try something new. Well, I decided I had nothing to lose and ordered it--I took my first packet tonight, this after having stomach pains almost the whole day. The pain immediately left and I feel remarkably better--I didnt have any gas or bloating and plan on taking two packets a day for the next week..I will post my results...

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2454
   Posted 8/18/2010 11:28 PM (GMT -6)   
I caught a pharma leaving my vsl#3 out of the fridge for weeks and trying to sell it to me. When I switched suppliers a 2nd time because they were out it failed to work twice so I suspect they are not keeping it chilled and switched again yesterday to the place I have always trusted.

" Digestive Advantage probiotics for Crohn's & Colitis"

Have not dared to try that because their IBS formula did me no favors and I am giving up on Florastor and Intestimine. Back to basics. Protein, canned spinach, VSL#3DS. Glass of warm Turmeric 3 scoops first thing out of bed ( nice orange teeth ) and some psyllium powder before any food. I think chocolate flares me and I was eating unrestricted and taking nothing so now its time to tighten up and stick to safe foods for a while. Heavy SCD influence and take the VSL#3DS up to 4 times daily if I can remember.

cslewis
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/22/2010 5:39 AM (GMT -6)   
The VSL #3 has been great thus far, aside from some occasional abdominal pain during the day--I started at 2 packets a day and moved to three yesterday--even though it's very early, I have no bleeding or mucous

Peace&Harmony
Veteran Member


Date Joined Jul 2010
Total Posts : 1121
   Posted 8/22/2010 3:59 PM (GMT -6)   
Zippy123 said...
Well whatever is they are doing apparently isn't helping. I warn everyone who is suffering so bad, that the some of the meds (Asacol) CAN make you worse if your body doesn't tolerate them. This isn't real common I don't believe, they do work great for some, but there are some of us where some meds make things worse. It is something to consider.
 
Interesting point about Asacol making you worst. I had bad side effect from a single  4 pill dose and started at alower dose...started bleeding real bad ths past Sat.  I started the Asacol due to a tint of blood on the tissue..hardly noticable.  Wonder now if the Asacol is made me worst?  Can Asacol start a flare? Hard to tell as this is so new to me! Thanks for the tip!

41 year old female Accountant, diagnosed July 2010
Remission..maybe not?
Rectosigmoid / Lt side UC, Sigmoid up to 30 cm....very mild?
Mesalamine 4gm enema daily, tapering as of 8/9/2010
Asacol oral 2 pills 3x daily - starting low
Folic Acid 1 mg daily / Probotics / Calcium + Vit D / Bene-fiber
Microgestin (birth control), Magnesium for leg cramps
Mindfulness Medition

Post Edited (Peace&Harmony) : 8/22/2010 3:11:46 PM (GMT-6)


crapshoot
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 9/11/2010 10:33 AM (GMT -6)   
cslewis,
Any updates on your VSL#3 experience? I am ordering some today and am curious if you've seen continued improvement?
________________________________________________________________

Diagnosed with U.C. (Proctosigmoiditis) June 2003
June 2003 - July 2004 - All corticosteriods and 5-ASAs
July 2004 - March 2010 - REMISSION! (Thank you 250 mg of Imuran)
March 2010 - present - stubborn flare :( - 40mg of Prednisone, cort enima, Canasa & dialing in Imuran (125mg) & Allopurinol (100mg)

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10090
   Posted 9/11/2010 4:55 PM (GMT -6)   
I didn't see any improvement when I used VSL3. Maybe I should have taken it for a longer period of time to determine the effectiveness but for the price, I didn't see enough improvement to buy it again. Hope you have better results.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

downgarden
Regular Member


Date Joined Jan 2010
Total Posts : 73
   Posted 9/11/2010 5:02 PM (GMT -6)   
Hey!

I started 1 week ago and the emergency bathroom trips has ceased! :)
I got "almost" no blood, before I had loads everyday.

I go for:
VSL#3 Double dose
boswellia
fish oil
liqurice extract
half way SCDiet

So much better really really hope it stayes this way. or improves :)

baconeggsyum
Regular Member


Date Joined May 2010
Total Posts : 303
   Posted 9/12/2010 12:12 PM (GMT -6)   
VSL#3 isn't covered in Canada by any insurance company I know of since it's not a Drug. I know Alberta Health doesn't cover it, nor should they. (it's not a drug!). It did nothing for me unfortunatley, none of these things have - Vit D, Fish Oil, Tumeric etc etc... I seem to do better when I eat way to much food!! My gut seems to like it . Odd. Thinking of going crazy on Broccoli due to the latest research on the plant fibres.
Ulcerative Col - 20 years
White Male Northern Canada - 6x800 asacal
3 Flare-ups -- all this year, first one's ever 50 Prednisone, does the trick right away then taper to 25/20/10/5 etc.. but so far flares have come back. Last one brutal, lost 15 pounds, 9.3 G/L Hemoglobin levels!
Put on Imuran if this round doesn't work, won't go on it though
Hoping to get some Salofalk next visit to doc!

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2661
   Posted 9/12/2010 1:18 PM (GMT -6)   
VSL 3 did not keep me from going into a flare. I could only afford one packet a day though. I switched to Mutaflor and that made me pass too much gas and mucous. Maybe I was flaring, but if so, it wasn't stopping it. So now I switched to Align cause it's much cheaper, but I don't know if it's doing anything.
2nd remission 4/10. Diagnosed pancolitis 9/15/09. 9 Asacol, Rowesa two nights, off one. Prednisone, 3 mg. every other day, tapering one mg./month. Possible adrenal dysfunction/borderline osteoporosi from pred. Avoid greasy, spicy, citrus, dairy (except yogurt), caffeine, alcohol. Lots of vitamins. Align, Bipolar: lamictal; Depression/anxiety, Lexapro; Sleep: Zinc Magnesium B6, melatonin

crapshoot
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 9/13/2010 7:23 PM (GMT -6)   
Downgarden, great to hear! I held off on my order and am getting a prescription of VSL#3 DS through my doc since it is covered under my prescription drug program. I feel pretty lucky about that. I just talked to my doctor tonight and he is prescribing me 6 sachets per day! Seems like a lot, but he said with active colitis, you need to take a lot.

He thought it was worth a try, saying that it does the trick for some people, but not the majority from what he's seen. I'm hoping to get lucky.

We shall see...
________________________________________________________________

Diagnosed with U.C. (Proctosigmoiditis) June 2003
June 2003 - July 2004 - All corticosteriods and 5-ASAs
July 2004 - March 2010 - REMISSION! (Thank you 250 mg of Imuran)
March 2010 - present - stubborn flare :( - 40mg of Prednisone, cort enima, Canasa & dialing in Imuran (125mg) & Allopurinol (100mg)

SeasideSpyder
Regular Member


Date Joined Aug 2010
Total Posts : 25
   Posted 9/15/2010 4:05 PM (GMT -6)   
Thrilled that I got the VSL#3 DS packets. They are in fact covered by my insurance. I currently take 2 packets daily and have significant improvement...ALTHOUGH, I did also start Remicade treatments. I had my first September 3rd and got for my second this Friday, September 17th. I was very impressed that after the first treatment, LITERALLY THE NEXT DAY, I started to have solid bowel movements and went from having multiple movements a day with a ton of blood and mucus to 1-2 movements a day with NO blood or mucus. I am however very concerned about the adverse side effects of Remicade. I thought that after the first treatment I would be a bit more comfortable but instead I find that I am more apprehensive than ever. Nervous Nervous Nervous.
27 yr old Married Female/ Severe Ulcerative Pancolitis Sufferer
Current medications: 60mg Prednisone weening off 5mg/week, 12 Asacol a day, Ferrous Sulfate, 2000mg Vitamin D, 2000mg B12, 1200mg Calcium, VSL#3 DS packets (2/day), 1tbsp Extra Virgin Olive Oil 3 times daily (natural anti-inflammatory)...Pompeian or Carapelli for dipping are best and 1tbsp honey.
Diagnosed February 21, 2012

crapshoot
New Member


Date Joined Aug 2010
Total Posts : 18
   Posted 9/22/2010 10:36 PM (GMT -6)   
Taking 4 packets of VSL#3 DS daily since Friday. Pretty early in the process, but can't say I've seen anything quite yet, other than stinky farts and a mild stomach ache, which isn't surprising given the quantity. I got a month supply, so I'll post any updates as I see changes.
________________________________________________________________
35-year old male, Chicago IL
Diagnosed with U.C. (Proctosigmoiditis) June 2003
June 2003 - July 2004 - All corticosteriods and 5-ASAs
July 2004 - March 2010 - REMISSION! (Thank you 250 mg of Imuran)
March 2010 - present - stubborn flare :( - 40mg of Prednisone, cort enima, Canasa & dialing in Imuran (125mg) & Allopurinol (100mg)

jt112055
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 9/23/2010 10:30 AM (GMT -6)   
my doc ordered me the VSL#3-DS (20 day supply). it wasn't covered by my insurance but the pharmacy said it'll be $24. i thought it was more expensive. does this sound right to anyone?
~ diagnosed with UC in October 2007
~ started on Lialda for 3 months, which resulted in pancreatitis
~ switched over to Remicade for 2 years; body stopped reacting to the medicine
~ on and off pred during Remicade
~ recently swithced over to Humira in February 2010
 
~ lift weights regularly
~ 2700 mg of fish oil daily
~ daily multivitamins, aloe gel pills, probiotics, and curcumin
~ vitamin D (5,000 IUs every 3 days)

lild
Regular Member


Date Joined May 2010
Total Posts : 227
   Posted 9/23/2010 10:38 AM (GMT -6)   
24 bucks sounds really cheap! What a deal! Even with insurance I pay almost double that!
28/F married Dx w/ UC 7/09 (Symt 3/09) 6/10 dx w/ pancolitis Remicade since 7/10; Pred. at 10 mg (60mg since 6/10)
Freeda Multi Vitamins Multi, Zinc, B Complex and Vitamin D (NO IRON)
VSL #3 DS Probiotic, homemade kefir, Serovera Aloe (Pill form)
****Trying to tackle SCD Diet!**** Status: Scale of 1-10 Im a 6-7

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 9/23/2010 11:00 AM (GMT -6)   
Sure they didn't mean $124......? That does sound cheap. When I was buying OTC, a box of the regular was $80.
Co-Moderator, UC Forum
Age 54. Diagnosed UP 1983, UC 1986
Asacol - down to 13 pills/day,
almost off Cortenemas. Rowasa 2x a week.
Metamucil - 2 doses/day
VSL#3DS, Multivitamin, Calcium and D
homemade yogurt each day
Remission!
Son, 17, dx pancolitis 2007, in remission

jt112055
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 9/23/2010 11:31 AM (GMT -6)   
i actually repeated the price to her and she said $24. i guess i'll find out when i pick it up.
~ diagnosed with UC in October 2007
~ started on Lialda for 3 months, which resulted in pancreatitis
~ switched over to Remicade for 2 years; body stopped reacting to the medicine
~ on and off pred during Remicade
~ recently swithced over to Humira in February 2010
 
~ lift weights regularly
~ 2700 mg of fish oil daily
~ daily multivitamins, aloe gel pills, probiotics, and curcumin
~ vitamin D (5,000 IUs every 3 days)

baconeggsyum
Regular Member


Date Joined May 2010
Total Posts : 303
   Posted 9/24/2010 9:28 AM (GMT -6)   
Just got this from the Manufacturer of VSL#3. Asked them about taking it -- when, with what, if I could take it with Prednisone etc...

"You can take VSL#3 at anytime during the day and when it is convenient for you. Do not take VSL#3 at the same time of your medication.

You can take it with yogurt or apple sauce or any cold non-carbonated drinks.

For ulcerative colitis we suggest 1 or 2 sachets/day"
40 g of prednisone. 30 on Friday, then 20, 15, 10, 5,4,3,2,1
6 x 800 asacol -wanting to start VSL#3 at night. Should I?
Hemoglobin dropped from 9.3 to 8.7 despite no more blood loss last 2 weeks due to Prednisone. Red blood cell production is excellent. Odd.
Chinese lady says I have worms. :)
See specialist on the 28th, will ask for Salofalk.
WANT TO NOT HAVE PROBLEMS COME BACK AFTER WEANING!!

jt112055
Regular Member


Date Joined Oct 2009
Total Posts : 21
   Posted 9/24/2010 12:43 PM (GMT -6)   
Are you saying then you cannot take it with pred?
~ diagnosed with UC in October 2007
~ started on Lialda for 3 months, which resulted in pancreatitis
~ switched over to Remicade for 2 years; body stopped reacting to the medicine
~ on and off pred during Remicade
~ recently swithced over to Humira in February 2010
 
~ lift weights regularly
~ 2700 mg of fish oil daily
~ daily multivitamins, aloe gel pills, probiotics, and curcumin
~ vitamin D (5,000 IUs every 3 days)

baconeggsyum
Regular Member


Date Joined May 2010
Total Posts : 303
   Posted 9/24/2010 7:34 PM (GMT -6)   
They are saying go ahead, just not at the same time. You should be taking ALL of your Prednisone in the morning. Take the VSL at or after suppertime.
40 g of prednisone. 30 on Friday, then 20, 15, 10, 5,4,3,2,1
6 x 800 asacol -wanting to start VSL#3 at night. Should I?
Hemoglobin dropped from 9.3 to 8.7 despite no more blood loss last 2 weeks due to Prednisone. Red blood cell production is excellent. Odd.
Chinese lady says I have worms. :)
See specialist on the 28th, will ask for Salofalk.
WANT TO NOT HAVE PROBLEMS COME BACK AFTER WEANING!!

Mrsarcasm
Regular Member


Date Joined Oct 2003
Total Posts : 80
   Posted 11/21/2010 10:06 AM (GMT -6)   
What does everyone mix the VSL  #3DS saches with?


Rowassa, VSL #3DS, Colozal

songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3250
   Posted 11/21/2010 2:33 PM (GMT -6)   
I mix the VSL sachets with applesauce, or watered-down juice (Orange, cranberry, apple,whatever I can tolerate and am happy drinking at the moment) or.... chocolate milk. I've mixed it with yogurt and have put it on ice cream, also.
Co-Moderator, UC Forum
Age 54. Diagnosed UP 1983, UC 1986
Asacol - back to 16 pills/day,
Nightly enemas: Rowasa 2 or 3 nights, Cortenema one.
Metamucil - 2 doses/day
VSL#3DS and other probiotics, Multivitamin, Calcium and D
homemade yogurt each day
doing well!
Son, 17, dx pancolitis 2007, in remission
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