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Crohn's Disease Forum

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  1. M

    Stelara every 4 weeks!

    My little penguin, I have been on Stelara for 14 months and have found it helpful, but I constantly feel that the effect wears off too quickly. My doc puts stock in the fecal calprotectin test, which this time came back elevated. I had a CT scan in ER, thinking I may have partial obstruction...
  2. M

    Mayo Clinic Thoughts

    Hi Katrina, I made the track to Mayo you years back. I am west coast (Seattle). I do believe Mayo is probably the top organization for IBD. US News and World Report ranks them #1 every year for gastroenterology. Not sure if you know, but Steph Targan is at Cedar Sinai near you. He is...
  3. M

    Stelara vs Entyvio? Patient Assistance?

    Stelara begins with an infusion, and after that you do injections. My gi tells me that stelara usually results in reduced inflammation for the patient than sooner than entyvio. My gi says entyvio takes about 6 months. Didn't say how long for stelara. My insurance was a horrible evil entity...
  4. M

    Mongersen

    My gi told me that there is some excitement that this drug may "cure" crohn's. Said something about an article in New England Journal of Medicine I believe. Hope it proves to be helpful.
  5. M

    What to expect from Stelara infusion

    Well, I called to schedule my infusion and the nurse said don't worry because they can stop the infusion any time and can use steroids and/or antihistamines to immediately reverse any adverse reactions. She also said they have not observed any adverse reactions from the other patients who have...
  6. M

    What to expect from Stelara infusion

    I finally got insurance approval for the Stelara infusion. I will be switching from Humira to Stelara, my gi says it is not necessary to have a waiting/washout period in which the Humira gets removed from my system before commencing Stelara. That said, I am a bit of a nervous type when it...
  7. M

    Any way to rewire brain/emotion - gut connection that drives pain?

    i have known for years that there is a direct neuronal connection between my brain and my intestines. When I get angry for example, I feel it immediately in my inflamed intestines as pain or inflammation rearing up. It is sort of analogous to the sensation in your gut when going down fast in a...
  8. M

    How to fight against insurance denial for Stelara

    RNGirl, so far, I have not heard any pushback relating to the infusion venue. We'll see. I know I spoke to a worker at the hospital infusion center in Seattle where I plan to have the infusion and they told me that it is important to have the infusion done at the hospital in case there is a...
  9. M

    How to fight against insurance denial for Stelara

    It's kind of odd because somehow my prescription meds are handled thru CVS while my medical stuff goes thru United. CVS already approved the subsequent injections while United is thwarting the whole deal by refusing the initial loading infusion to be done in the hospital. So now I have no...
  10. M

    How to fight against insurance denial for Stelara

    Hello, My dr. submitted a prior authorization request to my insurance companies last month to switch me from Humira to Stelara. CVS approved the monthly injections, but Unitedhealth denied the initial infusion. United said they denied due to lack of information. My gi had a "peer to peer"...
  11. M

    Humira Club Support Group

    Thanks for the explanation Doug. Maybe my insurance is different than yours. Mine mad no mention of FDA when I went to weekly. Maybe this is what your insurance as citing: http://www.accessdata.fda.gov/drugsatfda_docs/label/2011/125057s0276lbl.pdf Good luck going back to every other week.
  12. M

    Humira Club Support Group

    Doug, just curious, as I am battling insurance now. You say insurance won every round. On what grounds? Any advice or lessons learned insurance-wise?i did not get push-back from insurance when requesting weekly Humira but am getting pushback to try Stelara. Cool that your gi has samples for you.
  13. M

    Post your 2016 - Cost of Crohn's Treatment - Mine = $130,000

    I took Humira weekly, which I think would have cost insurance about $96k. One MR-enterography, 2 colonoscopies, 2 ER visits, doctor visits, etc, and so I think the total is probably ~$110k. Mainly Humira is the big cost.
  14. M

    Stelara vs Entyvio? Patient Assistance?

    Hi RNGirl, I grew up in Spokane (coincidence). Glad to chat with you. You are correct that Swedish does have a presence in Issaquah. I know some of their gi's, as they used to be with Virginia Mason Medical Center before several of them departed for Swedish a few years ago. However, I am...
  15. M

    Stelara vs Entyvio? Patient Assistance?

    My little penguin, you mention Ds was on remicade. How long on remicade and did Remi work for a while ir not at all? Thanks!
  16. M

    Stelara vs Entyvio? Patient Assistance?

    Thanks for the feedback all. Personally I never felt that Humira did anything for me. And even at weekly dosing, still nothing. So when my gi advised skipping the other anti-tnf's, I figured that's probably right. Now, had I felt that Humira had been effective for a while, then I would...
  17. M

    Stelara vs Entyvio? Patient Assistance?

    Thanks aypues, My dr. told me that my tnf receptors are currently "saturated with Humira" and therefore no other anti-tnf drugs (remicade, etc.) will fare any better for me. Apparently he can tell this from some kind of blood test. (He could also somehow tell that I do not have antibodies...
  18. M

    Stelara vs Entyvio? Patient Assistance?

    Thanks for all the replies! One follow-up question. I ask this because i have a very high deductible insurance plan. Regarding the first stelara infusion, would the cost of the stelara likely get paid by the stelara plan just like the injections, or would Jansen bill the full cost of the...
  19. M

    Seeking advice on next med to try (discontinuing Humira)

    Hi all, I have taken Humira for a few years. Looks like it's time for me to consider other options. I can choose from 2 drugs which have been approved in the U.S. Or I can take part in one of 3 trials. The 2 approved drugs are: 1) Stelara 2) Entyvio The 3 trials are: 1) Celgene's...
  20. M

    Stelara vs Entyvio? Patient Assistance?

    Thanks Clash, I appreciate that info. Hope it's helping.
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