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Remicade antibodies ?

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Ulcerative Colitis
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Posted 5/22/2018 2:56 PM (GMT 0)
Hi,
My daughter has been having a remission on remicade for about 4 years.
She has been experiencing weakness muscle and weight loss and daily fevers for several weeks.
Our internist ran bloods 3 weeks ago and all the blood levels were normal.
Yesterday the gastro did a colonoscopy and endoscopy that appeared normal, there was a small spot of inflammation at the top of the large intestine that the dr thought to be very benign,
Biopsies were taken throughout. Unfortunately the dr isn’t one for words and said we’ll
Hopefully have a better idea when all tests come back , including all remicade tests. 10 vials in total.

My question is , does anyone know how long a reaction to remicade would last? it’s 7’weeks
Since her last infusion. And do these symptoms seem like an antibody issue.
We’re going next week for results , but mean while she’s very weak and work is incredibly
difficult. She is an elementary school teacher and loves her job, she scrapes her way through. I live an hour away, and go into the city a couple of times a week , but there’s nothing I can do.
My husband and I have no peace of mind.
At this point we hope it’s the antibodies. So far there are no GI problems.
Sorry do be posting again I’m just trying to find answers.

Thank you
Posted 5/22/2018 6:18 PM (GMT 0)
It's possible that antibodies are causing fevers, weakness, etc. You'd need an antibody test to confirm that thought. If the immune system is fighting the remicade within her circulatory system then it tends to manifest itself as her experiencing more symptoms from it.

Everyone's blood clearance varies, on how quickly remicade would be gone from her system would vary. Having antibodies usually results in faster clearance then for those without. Generally, I'd bet it'd be a process of 4-5 or more months to completely clear the blood stream of remicade. You'd get relief as concentrations drop though.

Fatigue and weakness can be from UC flares in general, with/without medications. It can be from anemia, the flare, etc.
Posted 5/23/2018 7:36 PM (GMT 0)
No question that teaching is difficult when one feels physically weak. A while back when I was involved myself with teaching, a CT elementary school teacher advised, during a grad school seminar, that teaching personnel with pressing health conditions should try to join curriculum-writing projects in their school or district, if they need classroom leave. (Just throwing this out in case it could help your daughter at some point.) *** Probably the best you can do for her 'til medical follow-up next week is to think of some food(s) that agrees with her, something very soothing & maybe cooling to her burning feeling & get it to her in a cheerful presentation, maybe with a large balloon or flowers. So I'm wishing you all a good holiday weekend with more peace of mind. / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/30/2018 12:43 PM (GMT 0)
Thank you Old Hat, that's a great suggestion, she's meeting with administration today. Ill contact her about that thought.

Her bloods positive for Lupus. Not sure if it's genetic type ( borderline on the double stranded test) or from Remicade.
Tomorrow we see the rheumatologist.
The steroids for pain stopped working.

Gi said take a break from all medicines for UC , at this time scope is good, so let's see.

Thank you
Posted 5/30/2018 8:39 PM (GMT 0)
You're very welcome, Jayce. Thank you for updating us on your daughter's tests/condition. Hopefully stopping her GI meds for the time being will facilitate a more accurate DX. In case she needs a rehab consult for the muscle issues, Dr. Jacklyn Bonder & 1 of her PTs helped me a lot last yr; they are very supportive & encouraging. It can take a couple months to get enrolled in their non-emergency PT program, which gastro might officially recommend; I found it well worth the wait & keep up with the exercises they taught me to strengthen specific muscles affecting lower torso/legs. /Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 5/30/2018 8:51 PM (GMT 0)
P.S. See also the 5/27 forum post here by Tiredofallthis poop on topic "Remicade causing drug-induced lupus". / Old Hat (37 yrs with left-sided UC; presently in remission taking brandname Colazal)

Post Edited (Old Hat) : 5/30/2018 2:55:37 PM (GMT-6)

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