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Crohn's Disease Forum

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  1. Scipio

    RAPAMYCIN - anyone on it ? New Member lots of questions

    In general, I’m in favor of considering new or unconventional treatments for Crohn’s or “emerging science” as you call it. After all, the effective therapies we have now for Crohn’s and other diseases all got their start as new or unproven treatments at one time or another. However, I favor them...
  2. Scipio

    The decision : On Biologics or Not

    Crohn's is a serious disease. Not normally deadly but seriously debilitating and destructive to having a normal life. And serious diseases almost always require strong medicine. Diet helps with Crohn's, but it is mild medicine. You need strong medicine to get this disease under control. As I...
  3. Scipio

    MRe for 8 year old

    The Labcorp and and Prometheus tests both test for both the drug levels and the anti-drug antibody levels, but they do it by different test methods. The Prometheus tests are based on HPLC - a method that separates proteins based on their physical size, and Labcorp uses ELISA - a method that...
  4. Scipio

    How quick stelara works?

    It's variable. For me it took about two weeks to start to notice improvements. For others it sometimes takes a couple of months.
  5. Scipio

    What would you do?

    I agree. During a child's one and only chance to grow and mature is not the time to be experimenting with "emerging" treatments and unproven cure-alls.
  6. Scipio

    Daily consumption of fruit/vegetables in OECD countries and crohn's disease prevalence.

    It's pretty well established that Crohn's patients very commonly have gut dysbiosis. What is far less clear is which is the cause and which is the effect? Assuming that there is a cause-and-effect relationship between Crohn's disease and the gut microbiome and not merely a statistical...
  7. Scipio

    Zeposia (Ozanimod) Flunks Its Crohn's Clinical Trial

    Bad News: Zeposia, which is already approved by the FDA for treating multiple sclerosis and ulcerative colitis, failed to hit its target endpoint in its Phase III clinical trial of Crohn's disease...
  8. Scipio

    JAK inhibitors long term efficacy?

    I don't know the answer to your question, but if they do lose efficacy over time it will be for a different reason than why the biologics commonly lose efficacy. Biologics and other large protein drugs most commonly lose efficacy because they are immunogenic and stimulate the recipients' immune...
  9. Scipio

    MAP at the 2023 UEG

    This paper is not in PubMed. The notation in its listing in Research Gate says " Preprints and early-stage research may not have been peer reviewed yet."
  10. Scipio

    1973. Intravenous alimentation.

    And conversely, many people without these mutations have Crohn's disease too - including me. I have ileal Crohn's disease yet I have the "normal" non-mutant alleles at both these loci. These genetic associations are merely that: associations, not yes or no causes.
  11. Scipio

    Medicare Coverage for Stelara

    New Developments As I posted in post #24 upstream in this thread, out of pocket drug costs for Medicare recipients was limited to $2000/year by Pres. Biden's new infrastructure/climate change law, beginning in 2025. This is still true. What I recently found out is that the same law also reduced...
  12. Scipio

    1973. Intravenous alimentation.

    If we knew a hard, fast answer to that question we would understand the cause (by implication perhaps the cure) of Crohn's a lot better than we do right now. That question also assumes there is one big bacterial answer to Crohn's, and it's probably not nearly so simple. To begin with, IMO, the...
  13. Scipio

    1973. Intravenous alimentation.

    I assume you mean bacteriophages, and they could in theory help. But bacteriophage (usually just called "phage") therapy research has progressed only slowly over the decades. It has usually proven to be cheaper and easier to chase a new antibiotic than it is to develop a phage into an...
  14. Scipio

    FECAL TRANSPLANTS: A Guide

    New medical practice guidelines from the AGA endorses FMT for treating C. diff. infections but not for treating IBD or IBS: https://www.gastrojournal.org/article/S0016-5085(24)00041-6/fulltext
  15. Scipio

    New member - query re urgency

    In my experience the urgency is linked to the inflammation. When the inflammation goes down the urgency goes down with it. My episodes of urgency went away when I went on a biologic (Stelara) that got the inflammation under control.
  16. Scipio

    What would you do?

    This is statement is contrary to what you hear prominent IBD docs say at the big medical conferences. When changing drugs is called for, they usually advise to change "within class" first - in this case change to another anti-TNF and only after more than one anti-TNF drug failures consider...
  17. Scipio

    Looking for some

    Hmmm...I think another opinion might be in order - preferably from an IBD specialist. In my own case I had symptoms of primarily anemia and abdominal pain, and it was the sighting of a few aphthous ulcers in my terminal ileum by capsule camera endoscopy that caused my GI to diagnose Crohn's...
  18. Scipio

    Big Specialist Appointment Anxiety

    I'm not sure what your therapist means by that. Crohn's and lupus are different diseases, but they are similar in that they are both incurable but both can be "managed" to reduce and control symptoms and reduce the risk of long-term damage. They are also similar in that both involve an...
  19. Scipio

    Stelar injection

    I don't think your Stelara injection will affect that colonoscopy one way or the other. It takes more than one day for Stelara to exert it's effects. Just one day after injection Stelara will not have even equilibrated and spread evenly thoughout the blood stream yet, much less had a big effect...
  20. Scipio

    does this seem like IBD?

    I'm sorry to hear of your daughter's diagnosis. There are non-pharmaceutical options for treating your daughter's Crohn's, primarily EEN, which some of the other parents of kids with Crohn's can tell you much more about than I can. But I will say that even though some docs still prescribe...
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