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Crohn's Disease Forum

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  1. Pangolin

    Heard from Doc today

    I hope things go ok. When was her last Humira? Sometimes there's a rebound effect with these drugs, when the immune system is finally able to activate and make a fever again.
  2. Pangolin

    Thinking about Crohn's wrong has set patients back decades

    This proves that the immune system is reacting to certain bacteria, but what we don't know is whether this is a cause or an effect of the inflammation. Perhaps the inflammation (or, say, a defect in the intestinal lining caused by a prior infection) causes changes in the gut that allow bacteria...
  3. Pangolin

    Thinking about Crohn's wrong has set patients back decades

    Kiny, I agree with you that the inflammation in Crohn's is primarily an immune response to bacteria. However, there are many unanswered questions about exactly which bacteria (my guess is it's not just AIEC), why some patients get sick and others don't when most people are probably commonly...
  4. Pangolin

    Thinking about Crohn's wrong has set patients back decades

    There is no consensus. However, there is a lot of evidence that food has something to do with the causation. Food allergies could be part of the causation in some cases, but my guess is that it's more often related to chemical damage caused by certain food components eg frying oils. Nothing has...
  5. Pangolin

    Thinking about Crohn's wrong has set patients back decades

    The near-exclusive focus on Crohn's as an immune disorder has clouded the judgment of doctors and has set back the research on Crohn's by at least a decade. Even today, many if not most doctors consider Crohn's to be an autoimmune disorder, although little evidence in favor of that theory has...
  6. Pangolin

    Humira Frequency Changes/Switching Biologics

    It took a while to figure out, but when we increased Remicade dose and frequency, we found that the side effects became worse and the inflammation itself became worse.
  7. Pangolin

    Heard from Doc today

    This is a relatively uninformed opinion in relation to O's particular case, but if you ask me I would think that EEN plus surgery to get out whatever parts are beyond salvaging would be the best path going forward for now. You're already attacking the immune system on multiple axes, so I'd be...
  8. Pangolin

    Little Pilgrim has Opinions

    Come to think of it, if I'm reading the thread correctly, she just started on EEN, right? I have a little EEN experience for comparison. Before my son was diagnosed, he was having abdominal pain, diarrhea, and very low appetite. We were desperate to get him to eat more, so we got him to drink...
  9. Pangolin

    Little Pilgrim has Opinions

    Could the back pain actually be due to the Crohn's and, perhaps, an abscess, rather than arthritis?
  10. Pangolin

    Watch Dr. Brian Coombes discuss his research into the possible link between Adherent Invasive E-coli and Crohn’s

    Tangentially related, here's my personal theory of Crohn’s, which I think best explains all the evidence. My guess is that it all starts with some kind of physical damage, eg from an infection, food digestion gone wrong (eg something about diet resulting in chemical damage in a particular...
  11. Pangolin

    Humira vs Stelara

    All the studies and reports I've seen indicate that Stelara is both safer and more effective.
  12. Pangolin

    High calprotectin and resection questions

    My son's fecal calprotectin was way up there at 9000 and 13000 (while on Entyvio, even), although his symptoms were not actually severe. He ended up getting a short resection to cut out a stricture at the end of the ileum, I think it was about 3 or 4 inches cut out. After the surgery, fecal...
  13. Pangolin

    Very worried - Possible Crohn's diagnosis for my 9 year old daughter

    Remicade is generally regarded as safer than methotrexate. Many doctors try to avoid steroids if possible due to side effects. Remicade alone is likely to be insufficient, so many doctors add methotrexate on top of that. Alternatively, you could use EEN with Remicade. I'm not sure how good...
  14. Pangolin

    Humira - Side effects - Neurological/ muscle fasciculations

    Wow, that's sad that the symptoms are still there 5 years later. Have they improved at all over time? Possibly similar: my son got little pains in various random places while on Remicade. Multiple times a day he would say "ow my finger/leg/wherever hurts", and this would last for 10 seconds and...
  15. Pangolin

    Humira doesn’t seem to be working

    Common. If you take a close look at the studies, you see that biologics including Humira only work well for 1/3 to 1/2 of patients. There's a lot of fear about switching from one thing to another, but if Humira isn't helping you need to try something else.
  16. Pangolin

    Regeneron While taking Humira Any information??

    Just curious, why not wait until he experiences symptoms before using regeneron? Also keep in mind that even unvaccinated 17 year olds are generally not at high risk from covid.
  17. Pangolin

    SOS. I need any advice..

    In case you're wondering, here's a reference regarding paradoxical uveitis caused by infliximab: https://pubmed.ncbi.nlm.nih.gov/31355342/ (glad to see at least some of the medical industry catching up on this)
  18. Pangolin

    SOS. I need any advice..

    My son was on remicade and had two dose increases, and after each dose increase problems similar to the description in the OP (eyes, throat, and perianal region) got worse. We were told to try a third dose increase despite the fact that the problems had increased after each dose increase, and we...
  19. Pangolin

    SOS. I need any advice..

    To be fair, there's a good chance the psoriasis would never have happened if not for the Remicade. These drugs can cause long-term damage to the immune system, and doctors frequently deny that side effects are real.
  20. Pangolin

    SOS. I need any advice..

    Yes, it's a good idea to see an ophthalmologist, but be aware that much of the time they may not be able to tell the difference between a side-effect and an extra-intestinal manifestation.
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