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  1. N

    Proposed Crohn's model and treatment approach

    There is always hope and I am sure with time a solution will be found. What is interesting that we still don't know for certain what is causing the disease. Can an actual treatment be found without knowing the underlying cause? The anti-tnfs seem to work by addressing the resulting inflammation...
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    Humira doesn’t seem to be working

    The numbers as reported on humira.com: https://www.humira.com/crohns/about-humira/results-with-humira Remission at 4 weeks: 21% (study 1), 36% study 2 Symptom relief at 4 weeks: 58% (study 1), 52% (study 2) Remission achieved and maintained: 40% (week 26), 36% (week 56)
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    Entyvio has stopped working for me after about 14 months

    I have had a deterioration in symptoms after about 8-9 months on Entyvio. It never got very bad and I was able to manage without a visit to a doctor. It improved after about 4 months - 2 infusions. I hope Stelara works for you.
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    Feeling Defeated a Little

    I went through a very long (10 years+) period of constant flare, and only recently went into remission. I was lucky not to be in pain, but the constant exhaustion, low energy level, and being chained to the bathroom made my life miserable. I don't know what to tell you, and this is not an...
  5. N

    A good sleep for a better life ! Personal experiment

    I am napping every day, and although it didn't help with Crohns it did help with the overall well being. When you wake up after the nap you should feel completely refreshed, like waking up in the morning. The biggest advantage to me is the gain of time. For less than 30 min of napping in the...
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    Whole Food Plant Based diet (WFPD) - with a one-month diary template for sharing your results

    Thank you for posting this. Didn't have time to fully reviewed it yet, but it looks promising. No one is selling anything here, and the information is free...I don't think the criticism so far is justified.
  7. N

    Cant we all help them figure this out?

    I spent years trying to figure it out just for me. Forget about other people with different DNA and different predispositions. I can control what I eat, what I do, and what medications I take, but still I was not able to solve the equation. Maybe there is no solution? There are so many factors...
  8. N

    Entyvio

    In my case, the drug is sourced by the pharmacy, but the injection happens at a small private clinic. I only had to deal with the pharmacy once when setting it up at the beginning. When the injection time is coming the clinic contacts the pharmacy and I am no longer involved.
  9. N

    In desperate need

    I am sorry to hear about your situation. I was there at one point as well. Can't really tell you what helped in my case as the flare just went away by itself. What is the doctor recommending?
  10. N

    when to take the vaccine if taking biologics

    I am on Entyvio with infusions every 2 months. My doctor recommended to take the vaccine one month after the infusion. I guess the idea is to have minimal interference between those two medications. I was not able to find any studies that would confirm this. Entyvio site has no information at...
  11. N

    Vaccine - 2nd dose interval

    Here is the link if you are in Canada where the second shot is delayed: https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/About-Crohns-and-Colitis/COVID-19-and-IBD/CCC-COVID19-Vaccine-Letter-2021-03-18-FINAL.pdf Did anyone had any success getting their second shot without the 4 month delay?
  12. N

    AIEC as the cause for Crohns? Calling Kiny!

    Thank you for sharing this. This is interesting: but haven't sugar-less diets been already tested without showing any benefits?
  13. N

    Skin Issues and Infections

    I also have those rushes in random spots on my body (back, legs). Some of them are bigger, some very small - all are itchy. I am treating them as eczema with cream, but they are not going away. With the air heating in my home and the air drier in the winter I am waiting for the weather change to...
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    Fails with other Biologics

    I have a good experience with Entyvio so far. What is interesting is that I knew right away, after the first infusion that it will work. Based on previous studies the majority of people start to feel better only after 6 months. I felt better right away, even though the improvement only lasted...
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    Job applications and self-identifying as having a disability

    I don't think Crohn's qualifies as a 'disability' but maybe I am wrong. I always thought disability is a condition that relates more to movements and activities that one can or can't do.
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    improvement after taking Entyvio

    After years and years of trying to improve my Crohn's with diet changes I finally decided to start a doctor recommended treatment. This wasn't an easy decision for me as I am very reluctant to follow medical advice if not supported by enough evidence. In case of Entyvio, based on the clinical...
  17. N

    Cost

    Same here. My insurance wanted me to go through other cheaper treatments first. My doctor disagreed and Entyvio picked up the cost.
  18. N

    Entyvio and bruising?

    I am on Entyvio but didn't notice any bruising that is more than normal. I do some extreme sports and do bump into things, but nothing like you described.
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    Weight gaining food for Crohn´s?

    Chocolate, almonds, mayonnaise - I also use Ensure when I can't tolerate eating anything.
  20. N

    My story

    Thank you for sharing your story. I hope you stay well. Almost 20 years of going through this is more than enough.
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