- Joined
- Oct 9, 2021
- Messages
- 10
Dear Friends
Daughter 14 year old diagnosed with Crohn's based on below
Symptoms before diagnosis
== RLQ and RUQ stomach pain, nausea/vomitting/severe diarrhea/history of anemia, iron def, vitain D def, severe joint pains, migraines, fatigue, , canker sores, blurry vision, irregular periods, pain during menstruation, involuntary weight loss from 110 lbs to 90lbs, weak muscles and so on
== EGD and Colonoscopy showing non-specified inflammation
== Inflammation and thickening (Small Bowel) found during MRE
== Severe inflammation, edeme, several distant Ulcers (Crohns ulcers), redness/etc found in Capsule studies. Diagnosed with Moderate to Severe Distal Small Bowel Crohn's
== Normal CRP/ESR througout (except during Pancreatitis)
== IBD Panel showing both ASCA Igg and Iga positive and elevated levels (
== FCP borderline above 100 and less than 150 indicating possible distal small bowel Crohn's
== IBD expanded panel showing 3 antibodies showing elevated levels (Suggestive of Crohn's disease with high risk of aggressive disease behavior (development of strictures or fistulae).")
== Tests from imunologist
== Elevated IGG2 subclass
== Highly elevated IL-4, IL-5, IL-6
Currently, getting Remicade 10mg/kg every 4 weeks, been on Prednisone 30mg (down from 40) for 3 months (she gets symptoms of joint pain, diarrhea and abdomen pain when trying to taper from 30mg to 25mg)
Prednisone and Remicade has put her in remission (More of steroid induced we feel), since she felt better 70% only just with Remicade alone. and she is pretty much IBD symptom free currently (except for Migraine and backpain due to accident). GI wants to add MTX to try taper Pred
Also, gallbladder removed due to severe RUQ pain and abnormal HIDA scan
Her current minor issues
== High Hemoblogin, High Heamoticrit, Low TSH, Cold feet and legs , high resting heart rate and high Ferritin
Questions would appreciate some feedback
= For her current minor issues, (low tsh, high ferritin, high Hgb and Heamoticrit and cold feet and legs), can these be due to Prednisone ? Any other possible blood disorders requiring heam or endocrin visits ? We will be meeting our GI next week to discuss these.
= We still not convinced if it's Crohn's alone, since she takes birth control for her possible endometreosis. She has been told IBD related Arthritis, since negative ANA. Even though it is all under control with her Pred and Remicade, we were wondering since ANA is negative to look for any other auto immune conditions, since one follows other ?
= ANyone has issues tapering Prednisone ? (Joint pain, diarrha and abdomen pain comes back slowly, not as furious during flare though). We are concerned she has become steroid dependant, but she is pretty much symptom free now.
= Anyone had IGG or Cytokine profiles from Immunologist ? Immunolgist and GI thinks IVIG infusion plus Remicade should help her get rid of steroid dependance ? THoughts ?
Daughter 14 year old diagnosed with Crohn's based on below
Symptoms before diagnosis
== RLQ and RUQ stomach pain, nausea/vomitting/severe diarrhea/history of anemia, iron def, vitain D def, severe joint pains, migraines, fatigue, , canker sores, blurry vision, irregular periods, pain during menstruation, involuntary weight loss from 110 lbs to 90lbs, weak muscles and so on
== EGD and Colonoscopy showing non-specified inflammation
== Inflammation and thickening (Small Bowel) found during MRE
== Severe inflammation, edeme, several distant Ulcers (Crohns ulcers), redness/etc found in Capsule studies. Diagnosed with Moderate to Severe Distal Small Bowel Crohn's
== Normal CRP/ESR througout (except during Pancreatitis)
== IBD Panel showing both ASCA Igg and Iga positive and elevated levels (
== FCP borderline above 100 and less than 150 indicating possible distal small bowel Crohn's
== IBD expanded panel showing 3 antibodies showing elevated levels (Suggestive of Crohn's disease with high risk of aggressive disease behavior (development of strictures or fistulae).")
== Tests from imunologist
== Elevated IGG2 subclass
== Highly elevated IL-4, IL-5, IL-6
Currently, getting Remicade 10mg/kg every 4 weeks, been on Prednisone 30mg (down from 40) for 3 months (she gets symptoms of joint pain, diarrhea and abdomen pain when trying to taper from 30mg to 25mg)
Prednisone and Remicade has put her in remission (More of steroid induced we feel), since she felt better 70% only just with Remicade alone. and she is pretty much IBD symptom free currently (except for Migraine and backpain due to accident). GI wants to add MTX to try taper Pred
Also, gallbladder removed due to severe RUQ pain and abnormal HIDA scan
Her current minor issues
== High Hemoblogin, High Heamoticrit, Low TSH, Cold feet and legs , high resting heart rate and high Ferritin
Questions would appreciate some feedback
= For her current minor issues, (low tsh, high ferritin, high Hgb and Heamoticrit and cold feet and legs), can these be due to Prednisone ? Any other possible blood disorders requiring heam or endocrin visits ? We will be meeting our GI next week to discuss these.
= We still not convinced if it's Crohn's alone, since she takes birth control for her possible endometreosis. She has been told IBD related Arthritis, since negative ANA. Even though it is all under control with her Pred and Remicade, we were wondering since ANA is negative to look for any other auto immune conditions, since one follows other ?
= ANyone has issues tapering Prednisone ? (Joint pain, diarrha and abdomen pain comes back slowly, not as furious during flare though). We are concerned she has become steroid dependant, but she is pretty much symptom free now.
= Anyone had IGG or Cytokine profiles from Immunologist ? Immunolgist and GI thinks IVIG infusion plus Remicade should help her get rid of steroid dependance ? THoughts ?
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