- Joined
- Dec 4, 2011
- Messages
- 312
Options? - Remicade, MTX or 6MP - Remicade update
Looking for advice...This has not been a great week.
My 11 yr old son, H, was dx last October. Up until recently, he was considered mild and was doing fairly well on aza.
This week we went to doctor and he has a perianal fistula. :eek2: When we were there in July he had a fissure, and initially thought it might be another one. He was also tender when the gi pressed on his lower abdomen. His CRP and SED are higher than they have ever been. He was prescribed flagyl and cipro.
Obviously, aza is not putting him into remission. He had a thioprine metabolite test in April where he was not at a theraputic level and the gi upped his dose. Want to do another test and see where the levels are now. I requested a test kit directly from the lab testing provider and am waiting for it. At this point insurance has declined it and I am looking to do the testing outside of insurance.
H has an identical twin, who is a little taller and 25lbs heavier, so we know there is a level of growth failure.
So options GI proposed
Remicade
MTX
switch to 6MP rather than aza
I asked again regarding LDN.
Son is so not happy with the idea of an IV or weekly shots. His experience with an IV was for his scope. Nurse had problem with one arm, switched to the other arm and said she pushed it to far and then went with his hand.
Asked IBD nurse I respect there, what would she do if it was her child. She said, remicade. Asked about the blood cancer risk and she said, initially they thought it was the remicade combo but now it has been found with aza alone, and humira. Said it is not seen with rhemi patients on the same meds, just with IBD patients.
So, I am asking you all what you think. How did you talk about it with your child?
I am open to any and all comments.
:sign0085:
Looking for advice...This has not been a great week.
My 11 yr old son, H, was dx last October. Up until recently, he was considered mild and was doing fairly well on aza.
This week we went to doctor and he has a perianal fistula. :eek2: When we were there in July he had a fissure, and initially thought it might be another one. He was also tender when the gi pressed on his lower abdomen. His CRP and SED are higher than they have ever been. He was prescribed flagyl and cipro.
Obviously, aza is not putting him into remission. He had a thioprine metabolite test in April where he was not at a theraputic level and the gi upped his dose. Want to do another test and see where the levels are now. I requested a test kit directly from the lab testing provider and am waiting for it. At this point insurance has declined it and I am looking to do the testing outside of insurance.
H has an identical twin, who is a little taller and 25lbs heavier, so we know there is a level of growth failure.
So options GI proposed
Remicade
MTX
switch to 6MP rather than aza
I asked again regarding LDN.
Son is so not happy with the idea of an IV or weekly shots. His experience with an IV was for his scope. Nurse had problem with one arm, switched to the other arm and said she pushed it to far and then went with his hand.
Asked IBD nurse I respect there, what would she do if it was her child. She said, remicade. Asked about the blood cancer risk and she said, initially they thought it was the remicade combo but now it has been found with aza alone, and humira. Said it is not seen with rhemi patients on the same meds, just with IBD patients.
So, I am asking you all what you think. How did you talk about it with your child?
I am open to any and all comments.
:sign0085:
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