Stelara Support Group

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.
 
peluchde said:
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.
Click to expand...
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.
 
Ronroush7
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
 
Hello All, (RE: STELARA and NEW DRUG NAMED VIVLODEX)

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.
 
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?
 
Chica
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...
 
I just started the Stelara 5 days ago. I was on remicade for over 20 years. I was to the point though of having to supplement the remicade with prednisone in order for it to be effective and I don't want to be on prednisone.

So far I honestly feel like I've gotten slightly worse as I'm experiencing rectal burning already. I also feel slightly fatigued and the past day or so I've been very congested which is unusual for me.
 
@Poppysocks are you on bridge therapy (steriods) until Stelara kicks in ?
On average it can take 8 months to be fully effective.
Ds took steriods for a very long time 5/6 months before Stelara started to work abd 8 months to be effective
That said he got his first dose in Aug 2017 and it’s still going great

so worth the wait
 
my little penguin said:
@Poppysocks are you on bridge therapy (steriods) until Stelara kicks in ?
On average it can take 8 months to be fully effective.
Ds took steriods for a very long time 5/6 months before Stelara started to work abd 8 months to be effective
That said he got his first dose in Aug 2017 and it’s still going great

so worth the wait
Click to expand...
I am on a small dose of prednisone, my doctor wants me to wean off in 6 weeks though. I've read your posts about the Stelara and how it can take "8 months" to work. Is there data on that? Every doctor I talk to said it should kick in sooner than that, and their patients don't take that long to respond.

I have seen such variable responses though. For some, it kicks in in 5-6 days. For others, it can take up to a year to kick in. L I don't know if I could last that long. I've already been on low dose prednisone since January. I don't think I need it to be "fully effective" I just need it to keep my colon from obstructing.

Also, my remicade would always kick in in 3-4 days after infusion. I never had to wait months for it to kick in.
 
I start stelera next week, yet I really don't want it.

I'm actually in remission also, so I'll have no idea if it works or not.

Right now i feel like years could pass with no meds and I'll do just fine.

So maybe I'll take it for a few months then quit.
 
@westernbuddy
If you start a biologic and quit
Then you can’t restart the same biologic later if you start to flare. Your body will build antibodies and it won’t work anymore
Was your recent scope and imaging clean to determine remission?
Or are you going by symptoms?
Most Gi do a scope /imaging prior to starting a new biologic so you can measure if the med is working
They have a reference point of what your gut looked like prior and then what it looks like after being on the med awhile .
 
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That's ok, I can control the crohns with diet and partial enn.

If I take it for a bit then stop no need to start again.

I'm 100% good now, well I have 2 strictures, but I have had these for over 2 decades, and I'm completely symptom free and like a normal human now.

No need to be immune supressd and leave myself open to maligancies and infections.

Plus should I ever need meds in the future I'll have the whole cabinet to pick from as I'll be biologic naive.

Entral nutrition is the key 🔑
 
westernbuddy said:
That's ok, I can control the crohns with diet and partial enn.

If I take it for a bit then stop no need to start again.

I'm 100% good now, well I have 2 strictures, but I have had these for over 2 decades, and I'm completely symptom free and like a normal human now.

No need to be immune supressd and leave myself open to maligancies and infections.

Plus should I ever need meds in the future I'll have the whole cabinet to pick from as I'll be biologic naive.

Entral nutrition is the key 🔑
Click to expand...
Are you not on any medication right now?
 
I have had crohns for around 25 years.

1 x surgery when first diagnosed.
1 x ballon dilation
2 x courses of full enn.
5-8 courses of prednisolene.

Maintenance partial enn.

Last flair 2009 next flair 2021 got offered remicade and azathioprine combined. I declined.

Was told to pick any medication I wish, I picked stelara.

However prednisolene and a course of enn put me in remission, this was my #1 request, however doctors are persistent I take a biologic.



I could easy go about my life now and not even think I have crohns.

Partial entral nutrition is what I do take. "elemental 028" And the only reason I have gone all these years with no medication.


An apple a day I can understand, a biologic a day, hmmmm

I wish there was a medication I felt happy to take.

As of yet current meds kill to many immune cells.
 
@Poppysocks

How many years months had the remicade been wearing off ?

Your food options would have been getting less and less i guess?

Take a look at entral nutrition, you may even be able to swap your prednisolene for it.
 
Westernbuddy, I would think you wouldn't want to start a biologic unless you can look at the situation before and after and be able to say whether or not the biologic is helping you. Is there something still wrong that you can monitor for improvement, or are you really in full remission already?
 
I'm in full remission.

The only thing that may be different is food, as I have never had medication I have to avoid certain foods.

After many years doing this I don't even think about it, it's second nature.

I could maybe eat trigger foods and tell that way, that would be the only way.

However appears often that people on medication still have issues with food.

And if I begin eating trigger foods and feeling fine., and bacteria in certain foods is the trigger for crohns I'm doing myself more damage than good.
 
westernbuddy said:
@Poppysocks

How many years months had the remicade been wearing off ?
Click to expand...
I'm 33 now. But I was trying to get off of remicade in college with diet. I even was researching enteral nutrition back then. But switching remicade from every 6 weeks to 4 weeks gave me another 4 or so years. Then, when it started wearing off again, I finally started making some unique and strict dietary changes which helped the remicade last another 4 or so years. Then I came down with a positive TB diagnosis a few years ago which spooked me, and I wanted to get off the remicade. So I started stretching it out to 6-8 weeks. Bad idea. Eventually got to the point where I was literally only consuming elemental formula and not eating anything because that was the only way I could poop. My stricture kept tightening over this entire time until I said screw it and I ate some chicken and rice at a hibachi restaurant for my birthday. That ended up causing an obstruction and I had to fly to another state to get the stricture dilated ( first time). I've been on prednisone ever since (about 8 months). I said screw it and went back to remicade every 4 weeks but it's not enough to keep the stricture under control so I have to stay on the prednisone. This is why I am trying the stelara. They want to give me a colostomy bag.

Anyway I've been down your route and I've done the enteral nutrition and I've even read the research that it is just as effective as corticosteroids but thing still ended badly for me. You've never had to be on any type of biologic though so maybe it works better for you.

I would get sick of not being able to live a normal life though.
 
my little penguin said:
@westernbuddy
If you start a biologic and quit
Then you can’t restart the same biologic later if you start to flare. Your body will build antibodies and it won’t work anymore
Was your recent scope and imaging clean to determine remission?
Or are you going by symptoms?
Most Gi do a scope /imaging prior to starting a new biologic so you can measure if the med is working
They have a reference point of what your gut looked like prior and then what it looks like after being on the med awhile .
Click to expand...
I went 4 months without remicade and went back on it a few times. It's not so cut and dry. Sometimes you build antibodies. Sometimes the drug just stops working.
 
That is the annoying thing about crohns it can be unpredictable.

If the inflmation is not possible to control, then of course it is surgey.

Iv steroids and entral nutrition is about as powerful it can go first to avoid this, then of course ballon dilations. And we have immune suppressive drugs for maintenance.



I'm looking forward to a future where drugs are much more effective, much more targeted, and much more safer.

In the future they will be able to treat strictures without surgey.

When all this happens, I wish I knew.
 
So it's been about 3 and 1/2 months of being on Stelara, and it's not looking too good. I had to go back on prednisone this week. Tje crappy thing is the initial loading dose worked. I was able to get off prednisone and put on weight again. I went the entire 8 weeks in great shape. (I did start stelara a month after my remicade), so that may have helped initially with the stelaras success. But by 8 weeks it would have been 3 months off remicade it should've been completely out of my system and the stelara was still working.

I got the first injection and I was good for about another 3 and a half weeks before I started having problems. I knew at the time that if I was having problems at this point, I don't know how I can go another month without a dose. Sure enough at the 6 week mark the pain got pretty unbearable and I had to go back on prednisone 30 mg, and even that hasn't calmed things down completely.

We are going to try and get this approved every 4 weeks but the insurance was difficult for the 8 week approval. My doc seems to want to take things slow as he thinks it can take awhile for the stelara to kick in but I've already had a response to it. It's simply the dosage. I need more of it. Hes not as urgent as i am in wanting to get dose increased and basically said he doesnt think its going to work so i am not too happy with his attitude but he did say he will try and get it approved at 4 weeks if its its not working after my next dose
And honestly I'm not even sure if 90 mg injections every 4 weeks would work. I think I need a few booster infusions throughout the year and then injections every 4 weeks at a minimum.

I highly doubt I can get insurance to approve that considering cost of this medication.

All in all, my situation is no Bueno. I do have a pretty bad stricture in my rectal area. It's basically the only part of my body that's messed up. The drug doesn't need to be a dang miracle drug it just needs to keep the pain under control.
 
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Sorry to hear things are rough .
We were told it can take up to 8 months to work.
The first infusion is a high dose so it lasts longer.
Normally you are on steriods as a bridge therapy until it kicks in fully .

Ds stayed on steriods for 7 months .
In the end he did need Stelara every 4 weeks
But they fought insurance for 8 months from the first infusion till it was finally approved at every 4 weeks.

three years later insurance again tried to force the doc to every 8 weeks .
Doc tried every 6 weeks once and caused a flare so insurance again agreed to every 4 weeks after many months of appeals and reappeals/peer to peer

your Gi will have to battle it
 
Ehy
my little penguin said:
Sorry to hear things are rough .
We were told it can take up to 8 months to work.
The first infusion is a high dose so it lasts longer.
Normally you are on steriods as a bridge therapy until it kicks in fully .

Ds stayed on steriods for 7 months .
In the end he did need Stelara every 4 weeks
But they fought insurance for 8 months from the first infusion till it was finally approved at every 4 weeks.

three years later insurance again tried to force the doc to every 8 weeks .
Doc tried every 6 weeks once and caused a flare so insurance again agreed to every 4 weeks after many months of appeals and reappeals/peer to peer

your Gi will have to battle it
Click to expand...
Why did you push for every 4 weeks since the initial infusion? Did the initial infusion not even work for your son? How did you know he needed a higher dose?
 
The docs were treating his juvenile arthritis and crohns .
He was only on 10 mg of steriods for a bridge
His arthritis was really flaring for months prior to the Stelara infusion.
He did not get a response from the infusion or subsequent shots at 8 weeks
Rheumatologist was pushing for 4 weeks based on past experiences with other drugs
Gi was ready to give up on it after 4 months at every 8 weeks .
Gave it two more months (one more shot )
Then scopes -showed inflammation and thickening in MRE
Insurance finally agreed to every 4 weeks
Two doses later at every 4 weeks he was significantly improved
Has been good since
 
How often do you take Stelara?
Every 8 weeks ?
6 weeks ?
Or 4 weeks ?
how long have you been on Stelara at that dose ?
Stelara can take up to 8 months to work .
Ds needed every 4 weeks to keep his fecal cal down .
 
While active Crohn's is the most likley explanation for your stubbornly elevated FCP levels, it is not the only possible explanation. Other inflammatory processes such as celiac disease or infections are also known to increase the FCP. Perhaps you have Crohn's plus some other inflammatory condition - somthing the Crohn's medications can't help with.
 
Been under stelara every 8 weeks for 10 months and I just tested my calprotectin: 700
How should I react?
I’ve been having symptoms for few weeks/months…
 
Suggest asking about every 4 weeks for Stelara.
My son has been on it for 6 years
But he requires injections at 90 mg every 4 weeks
The first 8 months he was on Stelara every 8 weeks and the drug was useless.
At every 4 weeks
Scopes were good
Fecal cal below 15
And all bloodwork was normal
Insurance is tough to fight for it though
 
I went to do a scan to check things further and good news: all seem to be fine, I have no signs of active disease or thickening.

My docs suggest high calprotectin could be due to inflammation from my bile acids (I started questran only few weeks ago and had bile acid malabsorption symptoms for months…).
Of course I’ll test it again in a few months and see what happens.

Also I asked if a stelara dosing increase was an option, but apparently every 4 weeks is not authorized yet in my country.
 
I have Crohn's in my small intestine. Three surgeries, one was a resection.
I was on Remicade but it was not working. I then tested positive for valley fever (I am in the southwest). I got the first dose of Stelara in April and it helped for about 4 weeks. When I received the second dose the administering doctor said that the second and third dose often last longer.
 
wdcSuperman said:
I have Crohn's in my small intestine. Three surgeries, one was a resection.
I was on Remicade but it was not working. I then tested positive for valley fever (I am in the southwest). I got the first dose of Stelara in April and it helped for about 4 weeks. When I received the second dose the administering doctor said that the second and third dose often last longer.
Click to expand...
I had to pause treatment for 5 months until I tested negative for Valley fever.
 
Hi all, I have Crohn's in the distal ileum and have been on Stelara for over 2 years. I have what's being called "enteropathic arthralgia', which is joint paint with no radiographic evidence of arthritis. It affects my hands and more so my ankles, especially at night when I'm in bed and not moving. My ankles actually start to throb and prevent me from getting to sleep.

Has anyone else experienced this and if so, have you found a topical cream or something to do at bedtime that suppresses this pain?

Thanks!
 
mriguySeattle said:
Hi all, I have Crohn's in the distal ileum and have been on Stelara for over 2 years. I have what's being called "enteropathic arthralgia', which is joint paint with no radiographic evidence of arthritis. It affects my hands and more so my ankles, especially at night when I'm in bed and not moving. My ankles actually start to throb and prevent me from getting to sleep.

Has anyone else experienced this and if so, have you found a topical cream or something to do at bedtime that suppresses this pain?

Thanks!
Click to expand...

Wondering if this is what I'm having but in my neck at base of skull especially. Get extreme tension around that area, especially for weeks after taking my Stelara 90mg...trying to switch to see if that fixes it. Also get random spasms in my foot too though that can last days and keep me up. Sometimes other random locations like my arms, elbows, hands and even my butt cheeks. It's extremely annoying and keeps me up at night. Again, seems to get worse with my Stelara treatment as do the headaches and chronic fatigue. It has become debilitating last 4-6 months. Only things that's worked is diazepam but can't take that regularly. Other muscle relaxers don't seem to do anything aside from help me sleep a little, until they wear off. Current inflammation in my ileum and moderately elevated CFP levels
 
See a rheumatologist
Uncontrolled Crohns can cause things to flare
Joint wise
Muscles tend to spasm (sometimes ) when the tendons are tight from ERA ( type of Crohn’s related arthritis)
My kiddos juvenile arthritis flares independently of crohns flares
But gets worse if Crohn’s is flaring

He takes Stelara and methotrexate for both .
 

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