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Recent content by nofun

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    butyrate

    A study using primary intestinal epithelial monolayers from UC patients found that butyrate did not protect against inflammation-induced barrier dysfunction, and even worsened the effects of inflammatory cytokines https://academic.oup.com/ecco-jcc/article/13/10/1351/5421326 We found that...
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    RAPAMYCIN - anyone on it ? New Member lots of questions

    True, but by the same token, your personal successes in no way provide approval of the strategies you describe. It works both ways. It's important to prioritize evidence-based approaches, especially when it comes to managing serious conditions like Crohn's disease. Anecdotal success stories are...
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    RAPAMYCIN - anyone on it ? New Member lots of questions

    I googled some of the solutions you proposed with the following results: bacillus coagulans - has some potential, but nothing conclusive. There are some very limited in scope studies, mostly for IBS - nothing for Crohn's. Not really AMAZING. bifid bacteria - some help with IBS and UC but...
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    Crohn's muscle weight loss diet?

    My weight fluctuates and reflects changes to my diet and symptoms. The symptoms definitely have an impact, but the diet in my case is more important. When I went on an SCD Diet and stopped eating carbohydrates I lost lots of weight. Since the diet was not helping me when I stopped, I was able to...
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    If I still have something showing up on my video capsule does this mean Skyrizi is not working?

    I have a similar situation, but on Entyvio. My physical symptoms improved a lot, but colonoscopy did not show any healing. I decided to stay on Entyvio regardless as I had no side effects and really enjoyed the feeling of being healthy. I have been taking it for 2+ years, but unfortunately my...
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    Entyvio Receives FDA Approval for Injectable Version

    It took me a very long time to understand this and was stopping me from starting treatment. Another issue is the reported efficiency. For example Entyvio shows only 32% of patients achieving remission at 1 year vs 16% on placebo. Given the perceived risk and a small improvement over placebo...
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    Rinvoq

    I just had a consultation with my doctor and we discussed options if my current treatment stops working. He mentioned Rinvoq and was very enthusiastic about having this option in the future. Apparently the drug will become available in Canada later this year (for Crohn's). He mentioned how it is...
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    Experience with ENTYVIO

    I have been on Entyvio for the last 2+ years. I had a very fast positive reaction with an improvement of symptoms after 1 month. It took longer for the symptoms to completely withdraw. I had no adverse side effects. No extra infections, went through Covid on Entyvio as well with no issues. I...
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    Anyone else using Skyrizi?

    I am not on Skyrizi but during my last appointment my doctor mentioned that he has very good results in his practice with the drug. This is of course anecdotal evidence and you should take it as such. This is a new drug, just approved for Crohns and he said that he sees a very good response in...
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    Maybe organic meat and chicken is worth the cost...

    I think it is super important with growing children. I cooked only with organic food until my kid was 2 years old. It became too expensive after that.
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    Ensure

    I was drinking only Ensure without taking any other foods for about 3 months. It didn't help with Crohn's but I was OK otherwise.
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    How to decide which biologic to take?

    I don't have fistulas and my Crohn's is located in the large intestines. Do you know how Entyvio compares the the others in terms of how it works? If it stopped working for me maybe I should try something that works in a different way.
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    How to decide which biologic to take?

    Entyvio stopped working for me and it was recommended that I try a different biologic. The Doctor recommended Humira, Stelara or Skyrizi, but he was opened to try other biologics as well. How do you compare them to pick the one that is best for you? Is it just a try-and-see method or do you...
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    Modifying drug dosage/frequency intake

    Knowing that the response we get from taking medication can't be exactly predicted I wonder if doing some small tests on yourself with the intake frequency and dosage wouldn't be beneficial. The goal is to maximize the benefits and to limit side effects. I don't discuss this with the doctor...
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    To Entyvio or not to Entyvio

    I was in a similar situation 2 years ago, wondering if I should start Entyvio. I decided to go ahead and had a very good response. Unfortunately after two years my body stopped responding to it and unless something changes I will have to discontinue. I had no side effects but the improvement...
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