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Ulcerative Colitis
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Posted 11/28/2016 12:17 AM (GMT 0)
Hello,

havent been on in a while, been super duper busy with classes

a quick recap:
was having increased symptoms in march, crp came back fine but some labs showed deficiencies in some vitamins/iron etc...
dietician was concerned there was malabsorption so did CTE- was a bust, did Small bowel follow thru and diagnosis was changed to CD because of inflammation on small bowel
checked remicade levels and were still good
started 9 mg of entocort in august with plans of increasing azathioprine if entocort helped a lot
fcp didnt go down so increased entocort to 15 mgs,( have finally tapered it off)
doc said we can try two extra doses of remicade and if not drastic improvement then need to do c-scope
still having unformed BMs with recent blood so doc doing c-scope in a few weeks to see what is going on and to see if we can still give remicade a chance (i am scared to go off of it because of how much it helped me literally overnight)

also checked CBC and iron workup to see if I am anemic, waiting on results due to thanksgiving

What are your thoughts?
advice?
suggestions?

Thanks guys!!
Posted 11/28/2016 6:04 AM (GMT 0)
When did you start Remicade?

Have you had the blood tests for your infliximab trough levels and to check for antibodies to infliximab (ATIs)?

Also, 50 mg of imuran is pretty low. Generally speaking, dosing is 2.5mg/kg, which works out to just a little over your weight in pounds.

Advice is to do the scope and check your levels as above. Then let us know! :-)
Posted 11/28/2016 6:18 AM (GMT 0)
thanks for your reply,
I started remicade in may of 2015, it was a lifechanger. (was very ill and transfered from community to academic medical center, docs wanted to take out bowel because I was on iv steroids for 2 weeks and worsening, had hallucinations and was not all there, overnight CRP went down from around 150 to 70, i was able to tolerate a few crackers, drink water, and shower for the first time in weeks) I am terrified that going off of remicade will put me back where I started.

I agree the dose of azathirpirne is low,doc said it is only worth raising if we have control as it is very bad at inducing remision but better for keeping you where you are at
it was really given to prevent antibodies to remicade.
I had my levels checked in june and they were ok- no antibodies and I had a sufficient amount (dont have the lab value) in my serum
Posted 11/28/2016 2:21 PM (GMT 0)
1.) I'd increase the imuran/azathioprine dose to the recommended uc/crohn's dose of 2.0 to 2.5 mgs per kilogram. With my weight of 68 kilograms (or 150 pounds) would result in my dose being in the range of 136mgs to 176mgs a day. I understand only using it initally to decrease the odds of antibody formation to remicade but imuran is an effective IBD medication itself, increasing your dose might help with your symptoms. Given your struggles I'd give this consideration. Just wait 6 weeks for a result...

2.) Having a remicade concentration that's good, may not be good enough for every patient. My gasteroenterologist was saying some need concentrations above the baseline (3 or better is considered good), some might need a concentration of 5, 7, or more to have good results. I see you're at 10mgs per kilogram. What's your frequency 8, 6, or 4 weeks? Had you considered having infusions closer together?

3.) I understand the trepidation of leaving remicade, you can try maxing it out. I would consider another biologic if that doesn't work.
Posted 11/28/2016 4:54 PM (GMT 0)
What are your current symptoms?

If you are having urgency from because of your rectum being inflamed then you might want to try a steroid enema.
Posted 11/28/2016 7:04 PM (GMT 0)
My two cents would be to try to re-juggle the Remicide if it has worked well for you in the past, as ipoop says bring in the doses closer together while upping the Imuran, (belt and braces) this combination may work for you, I hope so!
Posted 11/28/2016 7:37 PM (GMT 0)
I'm on 10mg/kg
I did two bonus doses 4 weeks apart
The last one was theee weeks ago. I will have on win 3 weeks and then that will be my last until the colonoscopy.

I am willing to do it every 4 weeks from here out but depends how my bowels look.
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