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Hi there, My son was on Humira 40 ml every 14 days for around a year, and then this summer had similar test results as your son: calprotectin up, drug level around 5.5, and antibodies around 175. Our doctor immediately increased frequency to every week, and also added in weekly methotrexate...

I hear you on the "quirky" personality! It seems like in the medical field, the more specialized the area of expertise, the more "interesting" the personalities become! So much credit goes to you for finding the absolute best place for such an important step.

Thank you. This is really helpful. It's so hard to be patient and wait for improvement.

I hope things improve soon. It's so hard to tell if things are getting better until you can look at a trend of a week or so. He had his Humira shot 2.5 days ago, and things seem like they might be a tiny bit better, but not the big improvement we were hoping for.

Well, it seems my son may be one of those kids that also needs to maintain a very high trough level, at least for now. I called the nurse today and told her how quickly his symptoms returned (within 2 days of the first "skipped" dose), and that it was getting worse each day. She told me to go...

I will definitely call first thing tomorrow (Tuesday), but knowing how communication usually works with our doctor, I won't hear back from the nurse until the next day (Wednesday) which would have been his shot day anyway! So I don't think anything will change for this week, but I'm definitely...

So we are on the first attempt of trying out 2 week intervals for the Humira, and it already seems like his symptoms are getting worse. On the second day past when he would have had his weekly injection, he started to see softening of stools, and we are now seeing increased frequency as well. No...

Wow! That is all very useful information, and I will definitely be asking the doctor about this sort of situation. I am a little surprised that she was so quick to move him back to bi-weekly, honestly. Such a tricky balance between managing the inflammation and preventing the secondary issues...

We love Buzzy! He sometimes even brings it for lab draws. I will have to start working with him on considering doing his own shots. He has been pretty hesitant about the idea in the past. Right now, his older brother distracts him with card tricks while I do the injections! Pretty entertaining.

We definitely have the citrate-free Humira, and he never used to complain about it hurting. I think going from 1 shot every 2 weeks to 2 shots every week since we added Methotrexate is just too much, and the needles for the MTX are so tiny compared to the Humira that he can feel the difference I...

Great point on the metabolism changes, as well as the body not needing as much of the drug in the system once the flare has passed, which (knock wood) seems to be the case. He, of course, is thrilled to only need Humira every other week. He actually prefers the Methotrexate injections. Says they...

That's a really great suggestion. I will definitely bring that up at his appointment. The appointment will be nearly 4 weeks after the frequency change. Do you think that is soon enough for rechecking the trough? That would be after 2 biweekly doses.

So this was an unexpected development: my son had his bloodwork leading up to his appointment later this month, and after 6 months of adding Methotrexate injections and moving Humira to weekly to try to bring up the Humira trough level and get rid of the antibodies, his trough level went from 5...

You all make really good points. The doctor did mention Stelara as a possibility, but seemed to prefer giving Remicade a try first if we need to move on from Humira. I hear rumors that a new pediatric clinic with an adjacent infusion center may be coming to our general area in the next year, so...

This is a tricky question, but a good one! If I remember correctly from when my son was on prednisone, the immune suppression builds up somewhat gradually, but we were told to be cautious about exposure pretty much right away since he was going to be on them for 12 weeks. I think if you are on a...

I so wish that was an option for us! With my son's history of anaphylaxis (food and medication allergies) coupled with how far we are from medical care, his doctor strongly advised against that as an option if we need to switch to Remicade. As an unfortunate side note, home health nurses are in...

Yes, I'm trying very hard to focus on the positive for now, which is not always my strong suit. The tricky part for us is that although we know Remicade has a good chance of being very effective if we need to switch, it would be a pretty major challenge for our family to make it work, which is...

This all sounds incredibly frustrating. A last-minute new plan is always so jarring. You have to deal with the new information along with the frustration that it wasn't presented sooner. I know our doctor can often be so linear in her thinking and actions, and I feel like sometimes she doesn't...

Well, we had our GI appointment today, and the news was mixed but cautiously positive. We finally got a copy of the official lab results, and his Humira trough levels were as we thought: improved from 5 in August up to 14 in November after increasing Humira 40 mg to weekly and adding 25 mg MTX...

I'm trying to focus on the potential positive news, but the waiting is always the worst. Today I distracted myself by nearly slicing my thumb off while cutting an avocado and hitting myself in the foot with a sledgehammer while pounding a stake into the ground. Maybe non-stop Googling of medical...