It's been a while since I have been on here but the latest on my ongoing struggle with Crohns is my insurance finally approved humira. I took my first 4 injections last Wed and honestly I felt great as of Wed night. I slowly started to re introduce foods into my diet with no problems. I thought I was doing great up until 4 days later. I had a piece of chocolate pie and the pain came shooting into my gut like a stabbing knife. I called Mr humira and they admitted that sometimes because the first dose is high, people will get the feeling of remission but shortly there after it will stop abruptly. I was told it could take up to 3 months of continues injections to regain remission. I surely hope that's not the case. Much as I'm sure all of you can attest to, having ibd/ibs can be not only a physically but mentally and emotionally draining disease.
Replies sorted oldest to newest
My son is on humira ( and chronic antibiotics) and still has a very restricted diet. But he is finally stable and without pain. He misses chocolate though....
They say to give any biologic 8-12 weeks before you give up on it. My daughter went into symptom remission in 3 days after her first 3 injections (she's 11 and small, hence why 3)...
She's been on it since 2/14, and is in remission. Her fecal calprotectin was nearly normal at 78 (was >2000 on 2/10).
She's also on methotrexate orally once a week, but the reasoning is their latest literature says add an immunomodulator to decrease antibodies against the Humira. However, that thought might be changing to using the immunomodulator for 6-12 mos. only rather than indefinitely with the Humira. We will find out at the end of the month.
Also, she's never required a restricted diet, though we are very, very low gluten here.
She's been on it since 2/14, and is in remission. Her fecal calprotectin was nearly normal at 78 (was >2000 on 2/10).
She's also on methotrexate orally once a week, but the reasoning is their latest literature says add an immunomodulator to decrease antibodies against the Humira. However, that thought might be changing to using the immunomodulator for 6-12 mos. only rather than indefinitely with the Humira. We will find out at the end of the month.
Also, she's never required a restricted diet, though we are very, very low gluten here.
Rachel Raven, my son is on methotextrate with humira since October. I have no heard of this new idea about going off it after 6-12 months. Can you point me to any literature about that or tell me who is doing that research? Thank you.
I cannot yet.
We see GI at the end of the month. We see the director of GI at CHP, and she's pretty in the know, and mentioned this to us at the last appointment, that the NEWEST newest info is this now 6-12 month thing, but I cannot give you literature yet, as we've not seen her this month yet.
We see GI at the end of the month. We see the director of GI at CHP, and she's pretty in the know, and mentioned this to us at the last appointment, that the NEWEST newest info is this now 6-12 month thing, but I cannot give you literature yet, as we've not seen her this month yet.
Thank you. Please keep me posted on what you learn. I will also ask about this.