nord vsl #3 ds medical food cancels patient assistance program

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jazzlyric
Regular Member


Date Joined Mar 2011
Total Posts : 115
   Posted 1/2/2018 8:26 PM (GMT -6)   
I was just informed by NORD today that they are canceling their patient assistance program. This medical food had worked for me, and getting cut off without an opportunity to taper - as to not shock the system - concerns me. I was just curious as to whether anyone else enrolled in this program has been informed.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16736
   Posted 1/3/2018 12:14 AM (GMT -6)   
I am not surprised, but I find it interesting that the program lasted such a short time. I feel like we were all excited about them offering a program just recently, now a couple years later, it's over. I am sorry you weren't given adequate notice. Can you get your insurance to pay somehow? I know the OTC version is weaker, and it's very expensive to consistently afford a large enough dose to provide benefit. I would love to take VSL for my pouch, but still I can't afford it. Luckily I have been doing okay thus far without.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Bull101
Veteran Member


Date Joined Feb 2015
Total Posts : 565
   Posted 1/3/2018 11:20 AM (GMT -6)   
I wonder NSSG, you think 1 pill a day would help with your pouch at all? At that rate it would be ~$60 for 1 or 2 months I think?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13237
   Posted 1/3/2018 11:51 AM (GMT -6)   
Getting harder and harder to get insurance to cover medical foods like probiotics. Makes it tougher still with no patient copay assistance from the manufacturer. If probiotics work for you, then you must find an over the counter product that is affordable and effective. I know there is an over-the-counter version of VSL and it includes half the dose of the prescription version, just double them up to get the same results. I know a number of people here use probitiocs of varying brands, I'd check signatures and maybe you can find something else that might work.

I wonder if you could switch to another brand of strong probiotic that is more affordable? VSL is certainly the most expensive...

Ever considered making your own kiefer, yogurt, or other food with beneficial bacteria?
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Does the 5-second-rule apply to soup?

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/3/2018 12:06 PM (GMT -6)   
Didn't the original founder of VSL leave there and start his own similar company? I can't remember the name but it was priced much less than VSL.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/3/2018 12:09 PM (GMT -6)   
I've tried VSL-DS for my pouch and it didn't really help. The study that they refer to that had good results for pouches had less than 10 people (if I correctly recall).

My GI likes Florastor and Culturelle together, he said that combined that it is a broad spectrum quality probiotic. I find that it works pretty well with my pouch, I still need Stelara.

Right now Costco has great prices on Probiotics, New Years special.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16736
   Posted 1/3/2018 12:47 PM (GMT -6)   
Bull101 said...
I wonder NSSG, you think 1 pill a day would help with your pouch at all? At that rate it would be ~$60 for 1 or 2 months I think?


I think you really need to take the recommended dose to have results. I don't really have need for it at the moment, but I've seen studies that say it helps. Perhaps they are the ones keith mentioned, and with so few people, who knows? These companies will "prove" anything to promote sales & justify their marketing.

I was never willing to spend the amount required for a full dose when I had UC. I doubt I would spend it now in prevention. I simply can't afford it. smhair
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5163
   Posted 1/3/2018 4:20 PM (GMT -6)   
I paid out of pocket for my VSL-DS, I wasn't impressed. I spend $50 a month on probiotics with Florastor and Culturelle and I think it works better for ME.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Oligodar
Regular Member


Date Joined Jul 2017
Total Posts : 46
   Posted 1/5/2018 8:46 AM (GMT -6)   
Look at VIVOMIXX. I belive VIVOMIXX is similar to the original formula of VSL#3
==========================================================
Ulcerative Colitis for 33 years. 13 years ago sigmoideum adenocarcinoma - surgery successful
==========================================================
Salofalk 500 mg - 6 tablets, Mirtazapine 30 mg, Omega-3, Magnesium, SCD did not work
==========================================================

suttie
Regular Member


Date Joined Jan 2018
Total Posts : 26
   Posted 1/26/2018 10:06 AM (GMT -6)   
I'm going to try Visbiome (US company for vivomixx) .

I just started VSL#3 DS 2 packets/day this summer when I learned about the NORD programming and it helped me a ton. I was super disappointed to learn that it was being canceled. I hate to stop taking it, but I'm not paying ~$400/month for it either. I decided to try the lower strength (one 450 billion packet/day) from Visbiome (also available on amazon prime). It's about $10-20 cheaper than VSL#3, and supposedly the same formulation. Maybe with lower dose will be sufficient since I'm not actively flaring?
25 with Chronic (mild/moderate) UC.
Currend Meds: Lialda, Rowasa

Post Edited (suttie) : 1/26/2018 8:11:53 AM (GMT-7)


suttie
Regular Member


Date Joined Jan 2018
Total Posts : 26
   Posted 1/27/2018 12:41 PM (GMT -6)   
Great news! Just heard last night that the NORD program is being reinstated for 2018!!!!
25 with Chronic (mild/moderate) UC.
Currend Meds: Lialda, Rowasa

Asteroid
New Member


Date Joined Dec 2012
Total Posts : 4
   Posted 2/17/2018 2:25 PM (GMT -6)   
suttie said...
Great news! Just heard last night that the NORD program is being reinstated for 2018!!!!


Just emailed NORD and will call them on Monday to see about getting back into the patient assistance program for VSL #3-DS! Neither of my insurances cover medical foods so I'm really hoping I can get these probiotics back. They help tremendously with regularity and having vaguely normal bowel movements. I can tell the difference between a day when I take two sachets, one sachet, or no sachets. Had a colonoscopy last week and after a year of VSL #3-DS and a half year of adding Delzicol to the mix, it seems like my guts are happy about this combination!
32-year-old radar astronomer/grad student
Symtoms from June 2008; diagnosed in 2009 with ulcerative colitis; 2013 with Crohn's
(which started after six weeks in Ghana and a bout of gastroenteritis...)
Successfully tapered off of budesonide - ask me how!
4 Lialda; 4 Delzicol; 1 Rowasa daily; VSL #3-DS; usual assortment of vitamins
Gluten-free since March 2009; mostly low-carbohydrate these day

Asteroid
New Member


Date Joined Dec 2012
Total Posts : 4
   Posted 2/20/2018 1:10 PM (GMT -6)   
WOOHOO!

NORD reinstated the VSL #3-DS patient assistance program. Call Maria to get re-enrolled! It's good through the end of the calendar year. Contact Sigma Tau and ask them to continue with the patient assistance program! This is such a HUGE relief - may my intestines continue to appreciate this probiotic. (I also think it helps my depression.)

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