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Stelara Support Group

Still waiting for approval for the drug. Alberta Health has to approve it before they will pay for it. So I wait now.
Hopefully it will do something for me.
I started Stelara 2/2/16, after Humira stopped working and Entiviyo did nothing. I just got out of the hospital with another bad flare and small bowel obstruction. I came home and injected #3. The doctor added Entocort to try and reduce the inflammation. I met with the surgeon yesterday and scheduled a resection 4/28. This was my 11th hospitalization for obstructions. The scarring is there and has to come out. Not sure Stelara is going to work for me.
I started Stelara 2/2/16, after Humira stopped working and Entiviyo did nothing. I just got out of the hospital with another bad flare and small bowel obstruction. I came home and injected #3. The doctor added Entocort to try and reduce the inflammation. I met with the surgeon yesterday and scheduled a resection 4/28. This was my 11th hospitalization for obstructions. The scarring is there and has to come out. Not sure Stelara is going to work for me.
I hope it does work for you.
Well, just in the midst of a huge flare - fever, pain, diarrhea, nausea and the psoriasis is just as bad. GI has me on antibiotics, the dreaded prednisone to,see,if I can settle down. Wants to maybe up the doseage schedule to see if we can get it to work at all on anything. So far, no good.😓😷
My GI wants to start me on a biologic. I've only been on Budesonide and Pentasa. Had a very bad reaction to Pentasa. Any suggestions, advice on Stelara? Is it easier to handle for most and have fewer side effects than Humira? Thank you so much in advance!
Everyone is different but Stelara didn't do much for me. With Stelara, someone came out to gave me the injection but I give myself the injections with Humira. I hope the best for you.
I just started Stelara 1 month ago after failing Humira and Entyvio. I also was on Remicade in the past and it worked for a couple of years before I developed antibodies. Humira worked some but not enough, and Entyvio did not work for me. My last colonoscopy at the end of October showed a really sick colon and if things don't improve with the Stelara I will likely have surgery next. After this colonoscopy I was hospitalized for a week to get IV steroids and have been on 60mg of Prednisone since then. I'm doing the Stelara every 8 weeks, and am also on Imuran and Bactrim.

I am doing quite a bit better than I was two months ago but I think it's mostly because of high dose steroids they gave me because I was in such a severe flare (was having very frequent BMs, blood, fatigue, pain, and urgency, all of which have at least improved a bit if not completely gone away). I feel a lot better because I was really doing bad back then, but definitely wouldn't say remission. It's almost more like I'm used the symptoms I do still have. Now I am mostly dealing with semi-solid BMs with mucus, cramping, and lower back pain. I just saw my doctor for my 2nd follow up after hospitalization and he wants me to start tapering off of the Prednisone a few days after my 1st Stelara injection (2nd total dose, first is an infusion) after which he thinks I will be feeling even better. If symptoms do start to come back after tapering we will have to reassess. I cannot wait to get off Prednisone as I am really starting to feel the side effects (moon face especially, darker hair growth, weird energy levels/irritability, maybe tooth sensitivity? could be unrelated) but am just hoping that I will continue to improve instead of going in the other direction... It is definitely scary! I worry that the steroids are what have helped me and that without them I will decline again. But I also don't want to stay on steroids! I am really hoping the Stelara is actually doing something.

My experience with insurance: The drug just got approved for Crohn's in November and that's when my GI prescribed it. He warned me that he would almost definitely have to go through a denial/appeal process, which he did. After being denied and then doing a peer review I was approved around Thanksgiving and got my first dose 12/7. The hospital system I use does not give the drug so I have to go to a different infusion center, but once I start the injections I can do them at home. When I first scheduled the infusion my co-pay would have been $1,800 for one infusion. They recommended I sign up for the Janssen CarePath Stelara Assistance Program, so I did that and supposedly my co-pay now will just be $5. It wasn't hard to get approved for that, but I also haven't gotten the bill yet so hopefully won't run into any problems.

my little penguin

Staff member
Were you on the lower dose of Stelera (45 mg for psoriasis) or the Crohns dose (90 mg)?
They found for Crohns that the Stelera dose needs to be a lot higher

For those of you who are still dealing with significant joint pain, I highly recommend Vivlodex Capsules. I am currently on the 5 mg daily dose and am amazed how well it works. This drug is the capsule form of Meloxicam (Anti Inflammatory),however, the drug has a 'high tech' release which is specific to Vivlodex solely. For me, it works far better than Prednisone and generic Meloxicam. It was initially given to me by my MD Internist as a 'sample' and within 2-3 the drug had taken away my pain. Based on the cost, (it now has a manufacturer coupon card that works with your own insurance, thus, greatly reducing the cost to a co-pay), I tried generic Meloxicam 15mg, along with Prednisone, however, it only worked for about a few days. When I returned to the Vivlodex 5mg capsule (stopping the Prednisone and Generic Meloxicam), my pain subsided in less than 2 days. My doctor tells me that the Vivlodex has a high tech delivery system. Sadly, many doctors including my GI doctor was not aware of this drug.

In closing, I have started Stelara and have received my initial induction 360 mg IV infusion. Accordingly, I will administer my first 90mg injection in less than 3 weeks. To date, the Stelara has not had the immediate relief Remicade gave me when I first initiated it back in 2013. Sadly, I built-up antibodies to Remicade and later reacted to Humira.

As you may know, Stelara attacks specifically IL 12 and IL 23 - and I pray this newly FDA approved drug kicks-in and ultimately changes many of our lives for the better.
Well, I've failed at Stelara. Saw my GI last week and the dermatologist this week. I think they're going to try to get me back on Remicade(my miracle drug) and the derm dr is getting me on Otezla - a biologic only for psoriasis - although he says they've been seeing Crohns patients having a better time on it as well as weight loss (wow, wouldn't that be nice instead of always packing on the pounds with prednisone).

We'll see what they say when the two of them do their conference call.
I'm in my second week post infusion. So far the horrible night fevers have stopped & I have seen a slight decrease in blood in my stools. I still have to take lamotil every 6 hrs or it's horrible. Just wondering when everyone seen some significant improvement? Been flaring since November. Thanks
After a year on Stelara, my doctors felt it wasn't working after I had a Double Balloon Enterography and there was many new deep ulcers and continued diarrhea. This after having 2 1/2 feet OD small intestine removed last April. So, now I inject myself weekly with Metotrexate. I was told the pills would just come out and not do their job. I think this might be working, but I am also vigilantly watching my diet. It's only been 6 weeks and I have more good days than bad. So many meds have failed after a while, but I'm being positive. I've tried the usual Pentasa, Prednisone, Entocort, Humira, Entiviyo. All work for a time, but then just stop. I've not tried Remicade, but my doctor said it's the same makeup as the others and since they haven't worked it won't either. Good luck to you!
Hello, fellow crohnies. I am not new to this forum, was on many years ago but need a few questions as I am not crazy about being on drugs. I haven't been on any biologics in a few years. Humira was my last and didn't do any. I found that since I am now mild, I just saw a new GI as my old one retired. I was only on fLagyl for periodic flares which where controllable. Took t-3's when needed. My question is, would anyone go on another biologic drug if only in a mild stage. I am not crazy of that idea. This GI is leaving in july And won't be monitor me as us Canadians are hard to get any doctor. I am getting a colonoscopy on Thursday and depending on what he sees, should I go on Stalara...he was not happy I am not wanting to take it. I have had Crohns about 30 years. Most likely won't go on it. Just take a milder drug. Any opinions.
I have been on Stelara for three months and the only improvement I have noticed is that the skin issues that I thought might be permanent after Humira have gone away. It still gives me a blinding migraine the day of and maybe a few days after my injection. My fecal incontinence has gotten far worse but I'm not blaming the drug for that. It is possible that after nearly 2 years with active inflammation since my resection, Crohn's has destroyed more of my intestines. Taking .6mg of Opium Tincture in combination with a double-dose of Lomotil does get me through about 4-5 hours of work as long as I do not eat breakfast. The same dose at lunch and a very light lunch gets me through an entire workday.

I weigh more than I ever have in my entire life and I'm not sure how but I visited an endocrinologist and he reports my labs were fine. However, I did have a copy added to my patient portal and many of the items were flagged high or low. I am again frustrated with a medication but I will say that this medication has had far fewer side effects than Methotrexate and Humira. Actually, I'm not sure about that yet. I haven't had any labs yet. Ugh.

my little penguin

Staff member
Stelara takes a minimum of 6 months to work
It’s veery slow acting unfortunately
Since at three months you typically have only had one infusion -
Not even the first shot yet
Ds started in August and is now seeing improvements finally after one infusion and two shots

Good luck 🍀
Hi. I have been on Stelara for 17 months now. I was switched over having developed an extreme skin condition 60 months into Remicade. Stelara is a subcutaneous injection so it's easy to do from home & all in all I really rate it. However, I am interested to know if people get the tiredness setting in after a while? Also it would seem that in Austraila & the USA they allow 90 mg every 8 weeks? Here in the UK it's only every 12 weeks. I guess that's why I start to get more tired with increased bowel issues from weeks 7 to 12?

my little penguin

Staff member
Every 12 weeks is the psoriasis dosing not the crohns dosing
In the US trials FDA approved 90 mg every 8 weeks for crohns patients
And up to every 4 weeks at 90 mg

But that is after a large iv infusion as loading dose
Can confirm!
I think in order to get approved by insurance for 4 week dosing you have to do the regular 8 week dosing and show that you need more than that for full effectiveness. It was a tough approval process for me to get approved to go to every 4 weeks but that's what I'm on now. And yes, you do have to do a large infusion loading dose.
Wow - almost 5 years since I first posted here.
I hope every one is doing well.
I've been on Stelara Ever since.
I was in very good shape in 2015-17, been roughly on a dose every 3 months since 2017, I even went travelling for 6 months in South America (a friend brought me over my dose in a cooler bag halfway through the trip) I've been. Fistula has been a re-occurring problem though. My original one is not active but surgeon found another one slightly higher about a year ago, had a new seton put in but it still isn't draining quite right so back in for an eua soon.

I'm not really sure what effect if any Stelara is having on me now, my bloods are all good, ERP is normal, would be curious if I stopped would they stay the same at this stage. Damn fistula though...