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My son has been on Stelara for 1.5 years. He begain Jan of 2017. June of 2017 - It worked well and his Fecalcalprotecin was 222 with scope only showing very mild inflammation in cecum January Fecal Calprotectin - 1 1147 and 1 950.... Late March 2017 - Scope showed moderate to severe...

Thanks! That is great to hear. I did think that he is a very active and muscular almost 20 year old so perhaps he is metabolizing more but didn't also think about the inflammation piece. That makes a lot of sense. I hope to hear from penguin...and hope her son is feeling better. We are lucky...

Hi Everyone, We have an update. It does seem his FCP's are a great indicator of his disease state. At 900, it was much worse than his scope at 222 and a bit better than his scope at 1400 FCP. The Stelara levels came back from Mayo and he did not have antibodies but they were low. We got...

The lab did do the PCR panel and FCP. The PCR all came back negative. No C-diff or any other infection! His repeat FCP (only 1 week after initial) was 950 so 200 less but still very high. Plan to do scope Feb 1 and bloodwork for Stelara level and antibodies Feb 16 just before his next shot...

Susiedaynysmom, Please let us know what the doctor says. We heard it can happen with bacterial overgrowth in the ileum. It seems a lot of people do have this. Thanks.

Update: Doctor said we do not need to test for Cdiff because his stools are formed but I have read sometimes that some people do not have loose stools with it. He said we should do a scope to see what is going on and do Stelara level and antibodies within 5 days of his next dose which is not...

Mine was not concerned last year but when he emailed me about what to do re-high FCP he asked if did any supplements because his B12 was high. I did remind him it was higher last year and of course, I can't expect him to remember that. Then I got worried. I thought it was mentioned that is...

I know this is an old thread but my son (age 19) also has had high b12.....1224 last year and is 1042 now. Both times his fecal calprotectin is also through the roof at the same time. Did you ever get confirmation about your son? My son is not on proton pump inhibitors and does not take B12...

My son is 19 and was diagnosed at 13....likely started around age 11 when he stopped growing. I wonder where that puts him with Entyvio. I guess we will wait and see what the doctor says. He emailed me and asked how he was feeling and mentioned his B12 was high. It is high but was higher...

I didn’t know FCP can be that volatile so good to know and hoping we can retest and get his Stelara values and rule out a GI infection. The. We will see if he stays on Stelara or needs to move on. Hope it will work since he has had no side effects and it is so easy. Thanks again

Thanks- could be cdiff perhaps. I am hoping they do a PCR panel for infectious causes and see his Stelara levels and if he has antibodies. He is in college and doesn’t want to take methotrexate for social reasons. Wish he would and was on it for a few years in high school. I didn’t know they...

Hi Everyone, My son has been on Stelara for a year and felt great. Scope 6 months ago shows some mild inflammation in terminal ileum and cecum and FCP was low 200's last 2 measures. Just got another one back today and it is 1150! I emailed his doctors but wanted to know if anyone knows if it...

Indeed these decisions are so tough because the answers are just not black and white. It is very interesting that the drugs do seem to take quite a bit longer for arthritis. My son only has Crohns and adding in another condition I am sure adds a lot more to the decision and the medication balance.

newdiagnosis - I would ask if Stelara has evidence of being less effective in patients who also have arthiritis. I know it is used for Psoriatric Arthritis. Have you had an additional injection at week 8? That is the protocol. Have you had any labs or fecal calprotectin done? If you have...

That is great news. Thanks for sharing and sending good thoughts and prayers for continued recovery!

Sounds like the same way this is administered in the U.S. My son has had no side effects at all after his initial infusion in January or his first injection in March. Best to you!

Two of my kids have swallowed the pill cams with no issue at all. Once they put it in the scope so they could do the upper GI and then see the rest of the duodenum, jejunum and ileum. It worked just fine as well. I agree that you want to see the small intestine during any new study. In fact...

I would ask for a fecal calprotectin test to see if he has any signs of inflammation....that may help you to decide if further testing is warranted or if this is just something he will get through. My oldest had those symptoms and does not have Crohns...my middle son has Crohns and never had...

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...

My son had definitive benefits by week 8 but likely sooner. His doctor said it works pretty quickly and that benefits improve over time. His SED rate and CRP went down drastically on his bloodwork 8 weeks after his infusion dose of 360mg. He just had his first injection of 90mg a week ago...