Miserable itchy reaction and a flare- and my daughter has a new dx also -help!

[susanfrances]

Two issues here, and I really could use some direction.
I'm not new to crohn's- several hospitalizations, fistulatomies, bouts of episcleritis, all the usual suspects. 6MP did very well for a while, but over the summer I came out of remission and began Humira. Great for all my symptoms; but left me with a horrible rash- still two and a half months later I wake up in the middle of the night scratching- it's unbearable. My dermatologist is a big Humira fan and said there was no proof the rash was caused by the Humira and gave me a moisturizer. I wear long sleeves but scratch enough to bleed- it itches that bad.

Thanks for reading this far.... second issue.
After months of abdominal pain, gas, and loose stool, my 9 year old daughter had a CT this week that showed thickening and scarring of the terminal ileum. Her pediatric GI dr. has always said he thinks she is fine- his exact words were "I'm going to do the CT to prove to her there is nothing wrong with her". Even with the CT results, he won't treat her belly pain- not even Levsin. She's miserable and school and I am missing a ton of work. I live in a small town and he only comes up one day a week. I need a great specialist or specialty hospital somewhere in the southeast. I'll travel to get her good care.
Between her diagnosis, the doctor's indifference, and having to come off the Humira, I am having a terrible flare with pain and bloody stools...and then there's the itch! This red bumpy rash all over! I am supposed to start Cimzia today, but I'm not sure my body can take another change right now.

Sorry for the long post- thanks for understanding.

 

[Dexky]

Did the GI dx your daughter with anything? We see Dr. Sari Acra at Vanderbilt. He's not the greatest communicator, but we really like him. Does Chattanooga have anything?

 

[My Butt Hurts]

The only thing that I can think of is that maybe it was a 6MP reaction to the sun? Not sure when you stopped the 6mp.
I had a bad sun reaction to Imuran (similar drug) once, and there is a sun warning right on the label from the pharmacy.
Here is a rash that I had, and although it was terribly itchy, I don't remember it lasting for 2 months.
http://www.crohnsforum.com/showthread.php?t=5853&highlight=rash

I also remember having a very itchy rash on my arms once, but I can't remember what it was from or even what meds I was on at the time. I would itch and itch until the little bumps scabbed over with teeny pinprick sized scabs.

About your daughter - we often know ourselves better than our doctors, and same goes for our kids. If you think that something is wrong - something is most likely wrong. Keep pushing until you get an answer. I know you believe in your child, don't give up.
Good luck with all of this.
Glad you found us.
MBH

 

[Nica]

I am on Humira and get an itchy rash after injection. I take benedryl and use cortizone cream on it and it generally gets better. I have noticed the rash is worse right after injection and then fades within a week or so (to barely noticeable) then comes back full force after my next injection.It has never fully healed but my docs are watching it.

I hope this helps some.

For the GI doc in the Southeast, I live in Florida and have been referred to a Dr. Shiniski in Gainesville by several G.I's in the area. I know it would be a really long drive for you though,

 

[freezulu]

Please see my new thread "chronic rash, hives.." in the treatment forum.