Normally I'm just a lurker here, but, today I have some concerns and thought you guys may could help. I will give you guys a little info on our story first.
My name is Christy and I have 2 daughters, #1 will be 14 at the end of the month(has been plagued with tummy issues literally from the moment she was born but tests have been ran and she IBS and acid reflux, no Crohn's) and daughter #2 turned 13 yesterday.
#2 Has ALWAYS been a healthy child until she became anemic in August of 2014. They thought it was due to her period which had lasted for 6 months. Well we finally got her stopped but her iron was still low so she was put on 3 iron pills a day. In February of 2015 she had a severe uti and was put on a powerful antibiotic for it. It all went downhill from there. She was hospitalized March 31st for anemia (by a miracle from the Lord they were able to get it up quickly because she needed a bag of blood) and had erythema nodosum on her legs. Stool tests revealed that she had C. Diff(it was an awful case and it took us until November of 2015 to get rid of it) and then scopes revealed Crohn's Disease. She was diagnosed with moderate to severe Crohn's April 8, 2015 at 11 yo. She was in the hospital for 2 weeks (by the end of the year she had been hospitalized 5 times with a total of one month overall spent in the hospital). She was put on a plethora of meds with Pentasa and Azathioprine being the main Crohn's meds. She battled numerous abscesses with one having to be drained during a hospital stay(they aren't inside, they are on her girl parts) and it was finally declared that Azathioprine was no longer effective. Remicade was started in December and the abscesses were gone almost instantly and she was declared to be in remission in June. Things were finally looking up!
Fast forward 7 months. I got a call from the gi letting me know that bloodwork done at the time of the last Remicade injection (7/15/16) showed that she has now started creating an antibody to the Remicade and he said that we would need to start Humira around the end of August or early September. Well, she has already developed an abscess and eczema(something else she had during the flare)has taken her hands over so the doctor said more than likely her body has gotten rid of the Remicade already. She has been put on Cipro, Flagyl and Humira(we aren't sure on the exact date for the Humira but it will be within the next couple of days).
I guess I really don't have a lot of questions so much as I have concerns. Every medicine used is just one more bridge burned and in the world of Crohn's there aren't many bridges. Has anyone else had this happen? What were your results? The doctor said not to worry because there are meds out there and more being studied as we speak and that there is less than a 20% chance she will build an antibody to the Humira. I look at it this way though, she built one to the Remicade. What if it happens again? I just keep praying about it but it's scary.
If you've made it this far, thank you. It really helps having people out there going through the same thing.
My name is Christy and I have 2 daughters, #1 will be 14 at the end of the month(has been plagued with tummy issues literally from the moment she was born but tests have been ran and she IBS and acid reflux, no Crohn's) and daughter #2 turned 13 yesterday.
#2 Has ALWAYS been a healthy child until she became anemic in August of 2014. They thought it was due to her period which had lasted for 6 months. Well we finally got her stopped but her iron was still low so she was put on 3 iron pills a day. In February of 2015 she had a severe uti and was put on a powerful antibiotic for it. It all went downhill from there. She was hospitalized March 31st for anemia (by a miracle from the Lord they were able to get it up quickly because she needed a bag of blood) and had erythema nodosum on her legs. Stool tests revealed that she had C. Diff(it was an awful case and it took us until November of 2015 to get rid of it) and then scopes revealed Crohn's Disease. She was diagnosed with moderate to severe Crohn's April 8, 2015 at 11 yo. She was in the hospital for 2 weeks (by the end of the year she had been hospitalized 5 times with a total of one month overall spent in the hospital). She was put on a plethora of meds with Pentasa and Azathioprine being the main Crohn's meds. She battled numerous abscesses with one having to be drained during a hospital stay(they aren't inside, they are on her girl parts) and it was finally declared that Azathioprine was no longer effective. Remicade was started in December and the abscesses were gone almost instantly and she was declared to be in remission in June. Things were finally looking up!
Fast forward 7 months. I got a call from the gi letting me know that bloodwork done at the time of the last Remicade injection (7/15/16) showed that she has now started creating an antibody to the Remicade and he said that we would need to start Humira around the end of August or early September. Well, she has already developed an abscess and eczema(something else she had during the flare)has taken her hands over so the doctor said more than likely her body has gotten rid of the Remicade already. She has been put on Cipro, Flagyl and Humira(we aren't sure on the exact date for the Humira but it will be within the next couple of days).
I guess I really don't have a lot of questions so much as I have concerns. Every medicine used is just one more bridge burned and in the world of Crohn's there aren't many bridges. Has anyone else had this happen? What were your results? The doctor said not to worry because there are meds out there and more being studied as we speak and that there is less than a 20% chance she will build an antibody to the Humira. I look at it this way though, she built one to the Remicade. What if it happens again? I just keep praying about it but it's scary.
If you've made it this far, thank you. It really helps having people out there going through the same thing.
