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42 year IBD veteran but still frustrated

Diagnosed at 20 with Crohn’s, board member of a local CCFA chapter, led support groups, etc. I got my ileostomy in 1992, fine for a decade and about nine years of problems since the biggie. I have had pyoderma gangrenosum below my stoma, under the pouch faceplate, (ouch!), for over five years. Kenalog injections, oral steroids, re-siting the stoma, methotrexate, Cellcept, and currently modified cyclosporine which makes me incredibly fatigued, zombifies me really.

My PG dermatologist wants to switch to Stelara but I have Medicare and don’t qualify for the Stelara $5 coupon program and make too much money for other programs, @#$%^! So I am, (fill in the blank).

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  • thedancingcrohnie moderator
    9 months ago

    Ugh. I can understand the frustration. I am so sorry you are dealing with this. Perhaps Shelby’s links can help?

    If not, make sure you call Stelara’s company website and explain your situation. There HAS to be a program you qualify for.

    I hope this gets sorted out quickly so you can get relief soon.

    Elizabeth (team member)

  • ShelbyComito moderator
    9 months ago

    Hi @Bobbing56, thank you so much for taking the time to share a bit of your story. I know many of our members deal with accessing expensive medications, so you are certainly not alone. I found some prescription assistance information on Stelara’s website that you may have already tried, but I thought I’d pass along just in case: and I hope it’s helpful! Best of luck and please know we’re here for you. – Shelby, Team Member

  • Bobbing56 author
    9 months ago


    I appreciate the effort but I did follow all the links before and Googled, I don’t have a big income but it’s too high for all government programs and the two other links led to a site that doesn’t deal with Crohn’s and one that lists Crohn’s programs but all their money has been used up for the year.

    Janssen also makes Remicade which I was on for 14 years with the out of pocket covered by Catholic charities that ran the hospitals in Oregon and here in Tucson but Carondelet in Tucson sold itself to Tenet which does not have a program to cover out of pocket costs. I looked around and had the same experience as with their Stelara so I switched to Inflectra, a bio-similar, now that company gets the insurance money and Janssen doesn’t, they lose 25K a year in insurance payments, shooting themselves in the foot twice. Idiots.

    I guess I will have to be a zombie until a bio-similar to Stelara comes along and then give that company my business.

    Gabh an Latha,


  • ShelbyComito moderator
    9 months ago

    Ugh, I understand this must be so frustrating! I’m so sorry my links were of no use, and I wish I knew of some helpful resources to direct you to. I’ll keep an ear out for you, and I hope others will chime in here if they have any personal experiences and advice they can share. Thinking of you! – Shelby, Team Member

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