18 year old just approved for Stelara

[BoyMama2000]

Hi Everyone,

My son was no longer being controlled with methorexate and disease has expanded from terminal ileum for the past 5 years to throughout his colon and rectum per his scope on Dec 21. He has been on 40 mg of prednisone for 3.5 weeks that is getting things under control and also had c-diff that is now gone. We want to schedule the initial infusion but he just texted (he is a college freshman) that he has a sore throat and stuffy nose. Is it okay to start with a cold? I figure he is already on pred and metho so he is prone to getting all of the lovely illnesses college dorms have to offer. He can begin weaning off pred as soon as he starts Stelara by 5mg per week so we are eager to begin.

Any thoughts?

Thanks

 

[Clash]

My son started the CD dosage for Stelara bit before FDA approval for CD.

So his loading doses were 3 90mg shots on day 0 then another 90 mg shot on day 30 then 1 90mg shot every 8 weeks.

He has had a stuffy nose during stelara dosage time but this was after loading doses and with injection.

I just called and asked the GI nurse if it was okay to go ahead. Maybe you could ring his GI nurse and get his GIs thoughts or protocol.

 

[BoyMama2000]

Thanks, he went to campus health and no strep thankfully because the last thing he needs is to go on antibiotics after just getting over c-diff! He doesn't have the flu or a fever either. His infusion is scheduled for a week from tomorrow so I will call next week if he is not much better. He didn't have a fever at campus health either so I think it will end up being fine. Thanks for your input. How is your son doing? Does it appear to be working? I sure hope so.

 

[Clash]

It's hard to tell my son has been asymptomatic for some time yet his inflammation remains. He probably hasn't been on stelara long enough yet since I think he started only a few months ago. So his loading doses and 3 shots so far, I believe.

 

[BoyMama2000]

I thought I would give an update on my son....
He had his stelara infusion Jan 20th of 360 mg and his first shot was on March 17 (8 weeks later) of 90mg. He has had no side effects and all of his labs taken 3/17 are now normal except hematocrit and iron markers but they are going up and he is not taking iron. We just dropped off his stool for FCP (that has always been his most sensitive marker) so it will be interesting to see how that is next week. Fingers crossed it is drastically improved because it was 1440 on the last measure in December.

My concern is that he is no longer taking methotrexate even though his doctor said it is better to continue taking to prevent antibody formation. He is in college and has never been good at taking meds and I also think he wants to be able to drink so would prefer to not take it right now.

I know I can't force him too but wanted to know if this is "a battle worth fighting" or something to let go. He hates taking iron and we agreed that as long as his iron is going up, it is okay. He feels fine. Does anyone know how important it is to take something like methotrexate to prevent antibodies? I also plan to call his doctor next week to get his viewpoint on this. He is 18 and a freshman in college and I think he just wants to feel normal. However, I would hate for this to stop working since he is doing so well on it and a shot every 8 weeks is a very simple routine where we know he is getting what he needs.

Thanks.

 

[Maya142]

I would definitely talk to his doctor. Many doctors would like their patients on an immunomodulator to prevent the formation of antibodies. If you're not even sure if Stelara is working well yet, you would also want it for extra disease control.

Honestly, my daughter is a college student and has the same feelings about MTX. Hates that it restricts her drinking, doesn't love the side effects (even though they're minor) etc.

But she has tried to stop it (several different times) and each time, she has flared and ended up on steroids. Plus, she has been on many different biologics, so I do worry about antibodies too.

Anyway, to make a long story short, she is still on MTX. Her rheumatologist says it's ok for her to have 1-2 drinks per week. She's now older - 23 - so doesn't care much for the college partying lifestyle.

When she took herself off MTX, I made her speak to her rheumatologist by herself. If she's old enough to make that decision, then she is old enough to discuss the consequences with her doc. After the first time, she never took herself off MTX without FIRST talking to her rheumatologist and coming up with a plan.

I would definitely talk to his doctor and have your son talk directly to his doctor too. Sometimes kids listen better to doctors (vs. mom) even if we're saying the same thing!!

 

[BoyMama2000]

Thanks, I am going to ask him to call his doctor...then I will hope he actually does talk to him. He did tell him this in front of me but I don't think he wants to listen. I agree that it helps to hear from someone other than mom! He can also email him so maybe that would be good too. Then I can check in to see if he did call/email and ask his advice in a few weeks. Thanks for your voice of experience!

 

[BoyMama2000]

I see this thread again and wish he would have stayed on MTX since he has had a lot of inflammation which got better increasing Stelara dosing but still want him in MTX now since inflammation remains in anus and there is some mild stenosis/scarring there that they want to get under control!

He appears open to taking it again but only wants to do it orally...doc likes injections much more. We will see what happens. Ugh! I just wish this disease hit 10 years later when he was more mature!