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H has no large bowel symptoms and her calpro was recently over 4,000. She just feels "tired".

Does anyone know/remember what the side effects were like after the infusion? I know it's different for everyone but just wondering. I will probably keep her at home for a few days afterwards.

Absolutely try to work through their program. There may be a way to get help funding the doses that aren't covered by insurance. It's arguably a win-win in that situation.

Can you get assistance from the drug company on a compassionate care program?

When she was diagnosed her colon was such a mess that they couldn't complete the scoping. She did have severe colonic damage but not sure where it ended. She does have evidence of colonic inflammation on biopsies in her more recent scopes, but her damage in these scopes has been stomach...

I believe it also works well for psoriasis, which I think she is developing.

Darn. I was hoping better odds on different biological pathway. I should look it up if there are any studies.

@crohnsinct Her levels are WAY high! He said 37. She's starting to get side issues. It's an 80mg dose weekly that isn't working to bring down Calpro in the 1000's. I think we threw all the Humira at her. We had a 6 year + run on this med. I'm ok letting it go. We could go to Remicade now or...

Entyvio is second choice. We'd have to travel for those- they won't do any of them locally but I would like to use a drug with a different pathway than Anti-tnf.

Well...she has officially lost response to Humira. Working on getting compassionate approval for Stelara. It is not approved here for children. That is plan "A".

No. We did talk about it as a possibility. First 3 infusions we drive every 2 weeks to hospital. (4 hrs each way). H is 100lbs now so he will allow our local hospital to do the infusions after that. For the original poster: distance to infusion hospital was a big factor in our choosing Humira...

@Maya142 I did ask if she was the only one on 80mg, and he said she is not. I don't know how many patients he has that are, or for how long. He is also a researcher....so sometimes I wonder if she's an experiment. Those dark thoughts creep in, lol. We are getting levels and fcal results...

My daughter has taken Humira since the age of 4. She is now 10 and on an 80mg weekly dose. So it is possible to move up dosage amount as well as frequency with Humira. She has done well for 6 years. No hospitalizations and a steady school life (as in she can do what the other kids do- normalcy.)...

@my little penguin my son C is 12 and H is 10, they are flaring together. As girls mature faster than boys they might be on track to deal with inflammation in tandem as they mature. A 2 for 1 deal on Crohn's flares. GI asked for the derm report to go over the reasoning for the Tacrolimus...

@my little penguin She could be starting puberty but she isn't dealing with acne. I have a call into GI to double check the treatment for her skin. Also to see if the sinus problem which cleared up with antibiotics and then returned 24hrs after she finished the course is a Humira problem. That...

@crohnsinct she is using Tacrolimus her face, behind the ear and it says she can also apply to her leg but she has another cream for that.

Yes. H is off Mtx. The skin issues popped back up when her Humira levels were raised to 80mg and we dropped MTX at the same time. So that is very interesting.

Hello again! H had another round of skin issues lately. The patch on her leg never healed, just grew a bit, and we had a return of the skin issue behind her ear where it attaches to her head. Also a facial rash like breakout. This time we had pics sent to a dermatologist who diagnosed all of...

That's good news!

I should give the oil of oregano a try. We have family members who would rather we drop Humira and treat everything with herbs....so I get this knee jerk reaction to herbal speak but I am sure it helps some things. I will look for it for the sinus infection. Oh man...no, I didn't get her...