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@kasia79 i am very sorry you are going through this. Yes, it is true that Remicade is weight based. But they can increase the dose/weight and reduce the frequency if needed. It has been a while since my son was on Remi, so i have forgotten some facts. Others with more knowledge can chime in if...

Remicade did not work for our son either. No antibodies, enough medicine levels in his body, and still inflammation. His doctor recommended change of medicine. This was 1.5 years ago, and he was 16. I had the same concern about limited medicine choices, but his doctor was not as concerned. He...

Great advice…thanks!

Thought to add an update in case someone would find this post helpful. My son has been on Skyrizi now for almost a year and half and doing very well - no symptoms and no reactions :) His CRP and Iron normalized the first few weeks after he started infusions. By the time he got to injections, his...

To keep a point of reference, recent calprotectin ressult is 101… blood results are also all normal. Some high end of the normal band, but normal. I feel cautiously optimistic :) We are scheduled to the LIFT surgery for his fistula next week. Keep us in mind please.

No worries at all….The more the better. I am learning as we go.

Only if i could convince him to watch his diet - a stubborn 17 year old. This is very funny 😄 i am amazed how much your kiddos know about their condition. Mine is totally hands off. Only goes and gets his injections. Thats about it.

😂 Heard from the doctor. Just like you all said, he is focusing on the improvement for now. He said to continue Skyrizi on the same schedule and re-test in 2 or 3 months. He wants it below 250.

Praying for further reduction! Thanks!

Thank you so much all! You moms know a lot. Remicade did not heal the fistulas (he had 2). We did LIFT on one last summer, which was successful and confirmed by colonoscopy it is healed. Probably will do LIFT on the last one this summer.

Great to know. Thanks for the reply!

Originally, when he was diagnosed he only had fistulas, no intestinal manifestation at all. When we did colonoscopy 6 months ago his entire colon was inflamed. Doc said no need to do upper endoscopy or pill cam as the results wont change his course of treatment. So we know he has crohns in large...

Emailed our GI at mid night on Friday 😂, but hard to wait. June 2021: started Remicade July 2022: Calprotectin over 1200 and increased Remicade dose December 2022: Calprotectin 800 February 2023: Colonoscopy showed crohns has spread, and started Skyrizi May 2023: Calprotectin 400. Not sure if...

IT GOT APPROVED TODAY! Fingers crossed it continues to work. I was in a panic mode all weekend! Thank you all for your kind words and feedback! At our last infusion, there was another teen getting Skyrizi at the same time. the nurse said more kids starting to get Skyrizi there.

He got all 3 infusions - finished last Friday. He never had any physical symptoms before, except the draining fistula, which still is draining. We only found out about Remicade not working by labs and scopes. The disease had speared to his entire colon with zero discomfort!! As for the lab...

great to know. Since Friday that i found out pharmacy has denied the request, i am super anxious. I feel I shouldn’t have started the infusions until i had the pharmacy approval in hand. “BTW, I resent the term "peer to peer" because they are not peers - it's our specialist in IBD who knows my...

@Maya142, i know my self, i will call again to make sure things are moving along :). It is frustrating to have a kid with a chronic illness and deal with this insurance non-sense.

@Pangolin Thanks! hopefully the issue is just the need for further explanations. Will keep you posted.

Thanks! @crohnsinct, i will try to stay hopeful. I could not help, but calling them today which didn’t get anywhere.

@my little penguin, i totally understand.