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Dr was pleased with the therapeutic response @ 19.2 Inflammation did go down by half but it is still high. We will re-evaluate in 3 months. Pain continues at night and when she wakes up in the morning. I questioned if it was possible she should be checked for h. pylori.

I have to go back to look at the history, but her Remicade infusions were every 6 weeks, levels were around 10-15 the first year and a half. Humira (with mtx) is currently at 19.2. Even when on Remicade, her calpro had never been below 250.

So I was thinking….. if we never reached remission with Remicade, even having good drug levels ( in the beginning) and currently in the same place ( good drug levels but still inflammation). Do you think another drug class should be considered? (Crohns in ileum).

Thank you. I’ll keep you posted on what the dr recommends next week.

She’s 15- 40 mg every other week. Mtx is 15 mg weekly. She won’t do een.

Hi! I wanted to give you an update on my daughter Your insight is always so helpful. We have a gi appointment in two weeks. Here is some information since I last posted in June when my daughter had a bad reaction to Remicade, which resulted in the switch to Humira. August Calpro: 1000...

Hi All, So, Humira was approved. Her first loading dose was last week. No adverse reaction. We will see if symptoms begin to improve in the coming months. Fingers crossed. Thank you for your advice and kind words. I appreciate your knowledge.

Well, scopes were scheduled a few weeks ago for July since it would be a good time … summer, so maybe they would be changed now….. Have any of your kids have an intestinal ultrasound?

Thank you. We decided on the pen.

So, it was decided we are going to try Humira. It was submitted (stat) to insurance today. I contacted our case manager @ the insurance co and gave her a heads up that this is expedited. Colonoscopy is scheduled for July.

So much info. Thanks everyone. I’m so fortunate to have found this group. Results were received and I’m awaiting a call from the drs office.

Thanks for all of the advice. My daughter’s ibd is in fact located in her terminal ileum. I was told that Entyvio could take up to 6 months to work. My daughter refuses acupuncture. I even offered for her to watch me get it but it was a hard”no.” She is currently trying hypnotherapy. We have a...

Hopefully, we can avoid steroids. I heard from our consulting Dr out of state as well as our GI’s partner . Both discussed Humira and Entyvio. Humira will probably be the easiest to get a stat through insurance but no one wants to make decisions until labs come back. IB Stim is a device that is...

Unfortunately, My kid will not do EEN. To top it off, she came down with a cold this morning. Still waiting for a plan… clock is ticking .

Thanks for the heads up. Obviously, this has been a stressful week and trying to beat the clock by coming up with a plan with her doctor out of the country. I’ve been in contact with our consulting doctor out of state and awaiting his suggestions. I’ll let you know what is decided.

The infusion stopped @ the 13 minute mark. Awaiting results from Prometheus labs before a decision is made- should receive results today or tomorrow. I agree- we need to move fast so we don’t experience a flare. We were at 5 mg/kg every 6 weeks but in March moved to 10 mg/kg. Yes- functional...

My daughter has a group of friends who take Humira and they prefer the pen. I’ll keep you all posted on what the doctor recommends.

@ Maya -Thanks for your input. I appreciate everyone’s comments / knowledge. We originally had a choice between Remicade or Humira and we chose iv versus self injection due to my daughter’s fear of weekly injections. We have been blessed with a wonderful pediatric clinic for infusions. I will...

Thank you for telling your story and advice. It was a scary day for us but glad she’s alright. Our dr is out of town for another week but hope to have some answers from the partner on Monday. We also see a second Dr out of state and will send him an email tomorrow. We’ve been successful on...

Have any of your children been on Remicade for a period of time, no allergic reaction? Then, out of no where, during a treatment, they experienced an anaphylactic episode? Throat closing up, unable to talk, rapid heart rate, feels like body is on fire, severe stomach cramps, nausea, flushed...