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Recent content by nofun

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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...
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    Same here. My insurance wanted me to go through other cheaper treatments first. My doctor disagreed and Entyvio picked up the cost.
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    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.
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    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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    Covid-19 and immunosuppressant medications

    The Crohn's & Colitis UK created this useful decision tree document: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/decision_tree_v5.pdf Based on the choices you make, you will end up in one of three risk groups: - Shielding (higher risk of severe illness) - Strick social...
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    Covid-19 and immunosuppressant medications

    I talked today with my gastrologist about starting Entyvio. I had a concern regarding the increased risk of taking the drug during the epidemic. The information I received: Based on the initial data we see in Europe and China, patients taking immunosuppressant drugs like Remicade, Humira or...
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    Is raw, unpasteurized honey safe for Crohns?

    I have Crohns and only eat unpasteurized honey. It has no effect on me, but I think it is very subjective. Maybe she could try a small amount first? When I say no effect, I mean it both ways - I don't see a positive effect either.
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    How do you deal with Fatigue?

    In my case it is mostly low iron and general fatigue related to an active flare. I like staying late in the evening, but I noticed that if I don't get enough sleep I don't have much energy the next day. What really helped me with the fatigue is learning to do power naps. It was a game changer...
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    Vitamins and mineral supplements

    It is easy to find vitamins and mineral supplements that provide 100% of required daily intake. Do they really provide everything that our body needs? Can I just add empty calories, have two pills a day and be done? I am not advocating this as a solution, but just trying to find out how this...
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    Entyvio and the immune system

    Entyvio works differently than other biologics by focusing specifically on the GI tract. It prevents an excess of white blood cells from entering into the GI tract. Does it mean that the chances of getting an infection while taking it are smaller than when taking other types of biologics? The...
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    Would you take this drug?

    Yes it would be my first one. Penguin is right that Stelara is usually not the first drug prescribed. My doctor went around it by asking me to fill up a prescription for Imuran, and just report side effects without actually taking it. I am still on the fence regarding Stelara. My condition is...
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    Would you take this drug?

    I was referring to bias in clinical studies related to the funding sources. Most studies are funded by pharmaceutical companies with huge financial stakes in having a positive result. I have no idea if this played a role in the STELARA studies. It was just a thought when I have heard my doctor...