Non injection/infusion options?

[mreyn]

My son was tried on pentasa, and some of the other things. Then moved to remicade after a prep for scopes ended him in the hospital.

Had scary reaction on remicade, all labs showed normal, moved immediately to humira.

My questions are... if your labs are showing normal, can't you stay off meds until when/if they are needed?

What are the other options that may be non injection/infusion? Humira is so painful for him. Anything with less of the terrible side effects?

 

[Maya142]

I'm going to tag My Little Penguin, who uses Lidocaine with Humira to make her son's injections less painful. I believe she injects the lidocaine and Humira together.
My daughter is starting Humira soon and now that I know this is a possibility, I will be asking her doctor if we can do it. She's been on Humira before so she already knows how much the injections hurt.

 

[nogutsnoglory]

All of the biologics are by injection or infusion unfortunately. Is he on the Humira pen or syringe? You can try the other and see if its better but I found the pen more painful than the syringe. There are also techniques to minimize pain like leaving out for 30-45 min before and icing the area you will inject.

The immunosuppressive drugs like 6mp, Azathioprone are available in pill form and the 5-ASA's like Pentasa etc are pills but less effective generally.

 

[lgpcarter]

I found letting the Humira get to room temp really helped with the stinging. I know some people also use an ice cube to numb the area a bit for injecting. All the biologics are injected/infused.

Once you are firmly in remission it can be possible to get off the maintenance meds, but you have to be careful going on and off the biologics as you can develop antibodies. This happened to me with Remicade - went off to get pregnant and when I tried to go back on three years later had a reaction, so no more for me.

 

[my little penguin]

There are rhuemological studies where they used lidocaine mixed with humira - this the increased the pH and makes it less painful.

Our rheumotologist prescribed lidocaine to be drawn up and mixed in the original humira syringe prior to injection of the humira.
WE also use ethyl chloride spray ( numbing spray) just prior to the injection.

My kid went from screaming to an "ow that hurt" with injections.
Prior to that we had tried EMLA cream, buzzy bee, ice, distractions ( movies), leaving it out for an hour, fast injection, slow injection - none of those worked.

lidocaine mixed in the humira syringe does work for my son.

You would need a script from the doctor and instructions how to do it.
DS's Gi prescribed the humira but his rheumo told us about the pain trick and prescribed the lidocaine ( with instructions.)

You do need the syringe not the pen to be able to mix it.


http://www.crohnsforum.com/showthread.php?t=57008&highlight=lidocaine+humira


paper:

https://acr.confex.com/acr/2008/webprogram/Paper3820.html


as far as going without meds.....
typically crohn's disease course in children is severe
It also tends to spread over ten years from time of diagnose- unlike adults.
It also tends to go from inflammatory in nature to stricturing or fistulizing.

The only thing known to change the natural course of disease progression in children is biologics right now.

read some of the papers in the pediatric parents research section here:

http://www.crohnsforum.com/showthread.php?t=43002

meds are our children's best shot at keeping as much of their bowel as healthy as possible for as long as possible.

DS has tried almost all of them over the past two years.
biologics have given him the best response so far.
He aslo reacted to remicade.