Your Stelara experience

I haven't been here for a while. Six months have passed since I developed allergic reaction to Remicade. Remicade has been a lifesaver for almost 7 years and my perianal fistula could heal. However, since last November, I developed the allergic reaction I mentioned earlier for two successive doses and had to be switched to Stelara. The first induction IV dose was on February 1st. The, the second dose, which was the first SC dose was on March 1st and the second SC dose on April 6th. For 6 months, I have been suffering from a relapse and constant flare ups. My GI put me on pred and every now and then when symptoms become unbearable, I have to take courses of dexamethasone injections. Stelara doesn't seem to be working. I know it's too early to judge its effectiveness but given that I am relapsing, my GI decided that the next dose will be my last chance. I'm very cautious with food, my GI has even asked me to reduce the amount of food I eat as I do have severe inflammation, watery diarrhea, severe cramps, and rectal inflammation. Now, I'm on Entocort 9mg/ day, Pentasa suppositories every morning and night and have just finished another course of dexamethasone injections. I can't figure out why inflammation is that resistant this time. I know that Stelara is a slow burner but it doesn't seem that it is working. Other patients say that it takes months for Stelara to kick in but for me the idea that I'm relapsing is really devastating. Did anyone notice any improvements on Stelara during the first 3 months?

Well, Tom, hope your daughter feels better soon. I’m starting to question the effectiveness of Stelara. I’ve read a lot about how it is a slow burner but by the end of the day, when it kicks in, one can go into remission. I don’t feel it will be working. Actually, I feel that my Crohn’s is fighting Stelara off. I’m worried that I might need to switch to a third biologic in just 6 months and this would limit my options. Thinking of asking my GI to have ustekinumab trough level test before I take the dose next week.

Thank you, Susie. I did but unfortunately, I do take it every 4 weeks but to no avail.