Staying Positive

[Older Crohner]

Hi everyone...This is new to me. After having CD for 50+ years, I've joined a forum! Anyways, I'm in hopes of learning from others what I can do better. I've been on Remicade, Humira and Entyvio ( in that order). Today was my induction infusion of Stelara. It seems from what I've read, there is better results with these meds when you have not been on them before. Has anyone had a really good response to Stelara after having tried other biologics? I have to be honest with myself and say that diet has always been an issue for me. I've tried many and have even done a food diary....I think my biggest issue is discipline in what I eat and taking the time to document and analyze. Right now my doctors have asked me to try the IBD Anti-inflammatory Diet. Its quite restrictive in the "Flare Phase". Anyways, that's my story and I'm sticking to it! It's one foot in front of the other and try not to let this disease define who I am, because I'd like to be so much more than that.

 

[my little penguin]

So my kiddo was dx at 7 and now is 17
He was on remicade and humira
He has been on Stelara for the past 3.5 years
Plus methotrexate
Stelara can work but for some it takes a long time (8 months in his case ) and higher frequency (every 4 weeks in his case ) to work its magic
Bloodwork abd fecal cal has been fine ever since
There are many diets
Some work
Some don’t
It all depends
Exclusive enteral nutrition (een formula only ) has been proven to be as effective as steriods for when my kid was flaring
They use it a lot in kids
My kiddo hates it since it’s 6-8 weeks
Stelara normally needs a bridge therapy of steriods since it takes so long
In my kids case (he has juvenile arthritis as well) formula only alone wasn’t going to fix things

 

[Older Crohner]

So my kiddo was dx at 7 and now is 17
He was on remicade and humira
He has been on Stelara for the past 3.5 years
Plus methotrexate
Stelara can work but for some it takes a long time (8 months in his case ) and higher frequency (every 4 weeks in his case ) to work its magic
Bloodwork abd fecal cal has been fine ever since
There are many diets
Some work
Some don’t
It all depends
Exclusive enteral nutrition (een formula only ) has been proven to be as effective as steriods for when my kid was flaring
They use it a lot in kids
My kiddo hates it since it’s 6-8 weeks
Stelara normally needs a bridge therapy of steriods since it takes so long
In my kids case (he has juvenile arthritis as well) formula only alone wasn’t going to fix things

Thanks My Little Penguin....I've been on 9 mg Entocort, Entyvio every 4 weeks (not 8) and I was on weekly methotrexate subcutaneous. Have since gone off methotrexate because of covid risk. Calprotectin was over 1000...so a change to Stelara. The plan is to stay on Entocort til we see improvement. After my 2nd Stelara injection they are going to check drug levels and antibodies. They've already told me I will probably need 4 week dosing. Sounds like it just might work but take longer than hoped for. That is tough being diagnosed at 7....wow. I thought 16 was bad.....I don't think they had een formula when I was young. I can tell you his een was my gatorade...to this day I can't stand it. Thanks again!

 

[Guerrero]

Hi older crohner and welcome,
I have a similar story, been on aza, humira and entyvio now, but still have symptoms and calpro higher than 1000. Did they decide to switch to therapy because of calpro result only? You’ll be on stelara every 4 wks?

 

[Older Crohner]

Hi older crohner and welcome,
I have a similar story, been on aza, humira and entyvio now, but still have symptoms and calpro higher than 1000. Did they decide to switch to therapy because of calpro result only? You’ll be on stelara every 4 wks?

My calprotectin jumped from 300+ to 1000+ and I can't get off entocort. I've been on it probably over a year and steroids at my age (or any age for that matter) are not good

 

[Older Crohner]

My calprotectin jumped from 300+ to 1000+ and I can't get off entocort. I've been on it probably over a year and steroids at my age (or any age for that matter) are not good

Funny, I was on mercaptopurine (same family as aza) but they stopped it quickly due to fever reaction (104)