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  1. Maya142

    Surgery questions and experiences

    My daughter’s friend has Crohn’s that has never really been well-controlled - she has mostly small bowel disease which is worst in her ileum. She was first put on 6MP, then took herself off meds in college (despite being told by a GI that she would eventually need surgery if she didn’t start...
  2. Maya142

    Stelara Biosimilar - Wezlana

    Stelara Biosimilar - coming in Jan 2025
  3. Maya142

    FDA OKs Risankizumab (Skyrizi) for Crohn's Disease

    FDA OKs Risankizumab for Crohn's Disease — Approval marks the third indication for the IL-23 inhibitor in adults by Zaina Hamza, Staff Writer, MedPage Today June 17, 2022 The FDA has approved risankizumab (Skyrizi), an interleukin (IL)-23 inhibitor, for the treatment of moderately to severely...
  4. Maya142

    COVID and Paxlovid in immunosuppressed kiddo

    My daughter just tested positive for COVID yesterday. She doesn't have terrible symptoms - a bad cough, a very sore throat, low grade fever of 100.0 F and pretty severe fatigue. After many phone calls with her specialists and PCP, she was told to stop her meds (thankfully she forgot to take her...
  5. Maya142

    CDC: Some Immunocompromised People Can Get a Fourth Dose

    Anyone heard anything about this from their doctors?
  6. Maya142

    Entyvio and Enthesitis Flare

    My daughter (who has spondyloarthritis) was put on Entyvio a couple years ago. Her arthritis and enthesitis were just completely out of control - she became sicker than she was prior to starting Entyvio. At the time, there was no data suggesting a connection between Entyvio and an...
  7. Maya142

    Article - Helping Children Conquer Chronic Pain

    Good article about chronic/amplified pain - https://www.nytimes.com/2019/01/21/well/family/helping-children-conquer-chronic-pain.html
  8. Maya142

    Challenges Persist for Severe Crohn's

    Thought this was very interesting. I want to add we have been told differently about adrenal insufficiency - it is rare only because it's not tested for often enough according to the many endocrinologists we saw (M did develop adrenal insufficiency).
  9. Maya142

    Study on Entyvio and Arthritis

    Study on Entyvio and Arthritis
  10. Maya142

    Emergence of severe spondyloarthropathy-related entheseal pathology following successful vedolizumab therapy for inflammatory bowel disease

    Found this pretty disturbing - my daughter's SpA really flared after she was put on Entyvio. We didn't have enough evidence to say it was from the Entyvio at that time, but we did suspect it.
  11. Maya142

    Remicade - some hope!

    My older daughter told me today that she met someone through a friend at the arthritis foundation who also has arthritis and is on Remicade. She has been on Remicade for 17 years!! 17!!! She started Remicade very close to when it first came out and is now in her 30s. I have never heard of...
  12. Maya142

    School Stress May Trigger IBD Flares in Teens

    Interesting study about stress and school! Anyone see a pattern with their kids? My kiddo's arthritis definitely flares around September but not sure about her IBD...
  13. Maya142

    Meta-Analysis: Acetaminophen, NSAIDs Don't Consistently Worsen IBD

    Meta-Analysis: Acetaminophen, NSAIDs Don't Consistently Worsen IBD But authors stop short of recommending change in guidelines by Diana Swift, Contributing Writer May 02, 2018 A systematic review and meta-analysis has found no consistent overall association between worsening inflammatory bowel...
  14. Maya142

    Associations Among Mucosal and Transmural Healing and Fecal Level of Calprotectin in Children With Crohn's Disease.

    Interesting study about FCP in pediatric Crohn's!
  15. Maya142

    Childhood Crohn's Progression Halted by Biologics

    More research!
  16. Maya142

    Pediatric Use of TNF inhbitors Does Not Increase Malignancy Risk

    New study confirming that TNF inhibitors do not increase cancer risk in kids.
  17. Maya142

    No sting/burn Humira!

    https://news.abbvie.com/news/media-statements/humira-adalimumab-formulation-update.htm VERY exciting :)!! My girls are no longer on Humira but I know they will be thrilled for all those who still are.
  18. Maya142

    Study:Lack of Mucosal Healing from Modified Specific Carbohydrate Diet in Pediatric Patients with Crohn's Disease

    A good reminder to monitor carefully!
  19. Maya142

    Fecal Transplant Research

    From Boston Children's:
  20. Maya142

    Starting Cimzia

    Since there are so few kids on Cimzia, I figured I'd start a thread about M's experience. We are really hoping it will help both her Crohn's and AS. Her Crohn's has been flaring since this winter (after getting CDiff) and she has been on steroids for 5 months (and is VERY ready to get off...
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