Crohns and liver transplant - Humira?

Hi there. My son has Crohn's disease and primary sclerosing cholangitis. He had a liver transplant 2 years ago and now his crohns is very active and out of control . He had tried Remicade in the past but built up immunity after 4 sessions. He has tried Humira with some result pre transplant but hoping for better results now. He has done his 5th set of injections but getting a bit discouraged. After 4th set, he was better for 5 days but then really bad and stuck it out until day 12 and just injected. How long do symptoms take to change after the injection? How often are injections required more than every 2 weeks? Does the frequency change?

HELP - I want him to feel better but losing hope!

J

Please check out our parents section since there are a lot of btdt parenting advice on Ibd kiddos
http://www.crohnsforum.com/forumdisplay.php?f=49

As far as humira
Did he get a loading dose ?
How much is he on ? The kiddie dose (20 mg) or the adult dose(40mg)?
DS switch to humira after two reactions to remicade in April 2013.
It took about 5 -6 months to get back to normal
But he started in the kiddie dose for two months and had to increase.
Typically it takes about 4 months to see improvement ( normal).

Dosing is generally every two weeks
Then if needed can be increased to every 10 days or every week.
You can increase or decrease timing per your doctor .

DS recently had to increase his due to juvenile spondylarthritis associated with crohn's in his hands
He also had to add Mtx.

It will be ok don't give up hope.
There are other meds as well sterlera , cimzia and simponi

Good luck and hugs
My DS is only 10 but we have dealt with this since he was 7.

Tagging clash farmwife maya
Jmrogers4
Tesscom

Welcom Jrapp,
No experience with Humira but I have heard it can take some time to fully work for some. Where is his Crohn's located? As MLP has said can the adjust the dosage amount? My son is currently on remicade and we have had to adjust to max dosage as he just burns through it too fast.
What about adding another drug to help? Many have found relief with a combo therapy? Has he ever done Imuran/Azathioprine, 6MP, Methotrexate?

I just wanted to welcome you to the forum. My son has not used Humira. He has been on remicade and mtx. You got great advice from MLP. The humira can be adjusted as needed. Hopefully and adjustment could bring him into remission.

He is 19 years at this point. He was diagnosed at age 6, stable on 6 mp for about 8 years. He did a loading dose of 4 x 40 mg initially. As for the other drugs, some affect the liver too much (like methothtrexate) so not a good idea. He hAs tried imuran with a bad reaction and now has antibodies for the Remicade. actually, the only drug, antibiotic, that dose Him good is flaggyl And nobody Knows why. Unfortunately, the doctors Want to see if Humira has an effect so dont Walt the combinations for now...especially because of the immunosuppression from the prograf.

I am so discouraged and awake each day hoping for a better day!