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Stelara Support Group

theOcean

Moderator
A support group for those who are being treated with Stelara/Ustekinumab.
 
Is anyone else on Stelara for Crohn's? My doctor started me a week ago after I had a reaction with Remicade. What are your experiences with Stelara? Thanks.

2
 
I'll be starting soon, I hope. Stopped Simponi about three weeks ago and just in a washout period before my GI is comfortable starting the Stelara due to infection risks. I am also on 20 mg of prednisone at the moment. Could be another 7 weeks before I get the Stelara. Have an appointment on Monday and hoping he will move that up.

Anyone switched from one biologic to another quicker than 10 weeks in between?
 

AZMOM

Moderator
My daughter started Thursday (3 days ago). Due to neurological complications with TNF blocker, this is our first biologic since 2009.

J.
 
I started in Feb and am finally seeing some results from something. Went thru Pred/Imuran/Remicade and nothing unless I was on really high Pred doses. Not at 100% yet but its made a major difference. Having some issues with sore joints and pain though and searching around a bit to see if there is a connection. Also on Imuran now so could be that.
Cheers.
 

theOcean

Moderator
The joint pain is more likely from your IBD, but as it gets under control that should go away. Great to hear the Stelara is helping you!

With Imuran you should watch out for nerve pain, and report to your GI if you get it.
 
Hi, I'm dubious about it being CD related. Historically I've never seen an issue with it and although things change constantly, my gut has always be the main source of issue for me and would only see periphery symptoms when things got bad. So to feel great everywhere but my joints would be very out of character. Have done some digging and am starting to wonder if its withdrawal from the Pred which I tapered off of in Jan as a few people have reported identical symptoms elsewhere on the forum.
Cheers
 
I started in Feb and am finally seeing some results from something. Went thru Pred/Imuran/Remicade and nothing unless I was on really high Pred doses. Not at 100% yet but its made a major difference. Having some issues with sore joints and pain though and searching around a bit to see if there is a connection. Also on Imuran now so could be that.
Cheers.
How many times have you had it injected. I was told I would get it at 0 weeks, then 4 weeks and after that it would be every twelve weeks.

2
 
I injected once a week for three weeks for loading doses and then am to do every 8 thereafter. Not actually sure what size the doses were and have now tossed the packaging so can't check till the next one is sent to me. I've only taken the first dose after the loading doses so I'm pretty early into it. Within about five days of the first dose I started to get the sense things were improving and then by week two or so I was feeling pretty good. Hope it lasts.
 
For people who are going to start Stelara or who are using it now, are you using immunosuppressant(aza, 6mp, mtx) with it or are you on monotherapy?
 

AZMOM

Moderator
Crohn2357 - No new news (say that three times fast :rof:). We did the second loading dose at week 4 and it was uneventful. I can't really say what it is doing for GI tract since we are doing EN but we have starting weaning the Uceris. He says no MTX weaning until we are all the way off the Uceris and IF she's in remission. Her arthritis; however, continues to flare. The Rheumatologist (and of course the GI and us) is hopeful that the Stelara will make a difference in that as well.

I think it was Maya142 doc (they aren't on Stelara yet but are looking at in) that said it may take up to six months for the Stelara to be fully effective. Anyone else have a different timeline?

J.
 

Maya142

Moderator
Staff member
We were by my daughter's rheumatologist that Stelara does take a little longer - 24 weeks or so. However, that's for psoriatic arthritis and the dosing for that is a bit different (45mg every 12 weeks) than what seems to be used for IBD (seems like it's usually ever 8 weeks for IBD?).
My daughter is still on Remicade though, so we have no experience with Stelara (yet!!).
 
I start this week. Can't remember exact loading schedule but I think it is 0,1,2 and 4 weeks. Fingers crossed as this is my last drug option.
 
Having the nurse visit tonight to help me inject my first dose. Forgot to ask her when I spoke to her last night if I should take it out of the fridge 20 mins before like with Simponi and Humira?

Loading doses are 0,1, and 2 weeks and then every 8 after that.
 

AZMOM

Moderator
We were not advised of "letting it sit out" and the instructions say to keep in refrigerator. So, Claire's getting is straight out of the fridge.

Your post made me wonder and since I work at a hospital, I combed the "for healthcare professionals" website to see if it said anything about leaving it out. I couldn't find anything there either.

Please post if you here/read differently!

J.
 
The nurse advised to bring it to room temperature by taking it out of fridge 20-30 mins before (same advice as Humira and Simponi). More about stinging/burning with injection than anything else, I think.

First one went well - a little tender around injection site for a few hours last night but no other side effects so far.
 
I live in Virginia near Washington, DC. Does anyone know of any home health service that could come to give me the injection? Thanks in advance.

2
 
Mine was arranged through Janssen's BioAdvance program. Looks like it is only a Canadian thing, but you might want to check it out and see if there is American equivalent?

I live in Virginia near Washington, DC. Does anyone know of any home health service that could come to give me the injection? Thanks in advance.

2
 
Two loading doses under my belt now, and one more on Tuesday before I switch to maintenance dosing of 90 mg every 8 weeks.

Cautiously optimistic that it is helping, but proof will be in the pudding as I try to taper down the pred below 25 mg. BMs are definitely firmer and urgency is a bit less.

Nurse administered first dose, I was able to do the second one, so I am on my own now and feeling pretty proud that I was able to do my own injection. It was a lot easier than I expected.
 
This is my third biologic. I just read on a Facebook group for people with Crohn's that a third TNF won't work. Is that true?

2
 
Stelara is not an anti-TNF biologic - it is directed against interleukins 12 and 23 (which are involved in activating T cells).

I'm not on this, but I have until next week to decide between this and Entyvio. I am on LDN at the moment (have to love my gastro for letting me try it), and while it is helping, it isn't helping enough (my last scope didn't look so great). While Entyvio has been approved for Crohn's and Stelara has not, my gastro has a fair number of patients on Stelara (he told me to expect a battle with insurance, though he's only had one patient whose insurance still refused after appeals) and none on Entyvio (though that was as of my last appointment with him a month ago).

Always fun when the doctor leaves the choice to you...

(not actually complaining)
 

AZMOM

Moderator
Our primary insurance is covering it with a $75 copay per injection. Did our third loading dose last week and now go to every 8 weeks. Finger, toes and eyes (if it would help) crossed.

J.
 
My daughter has been on Stelara for over a year now and is doing great! She has been on all other biologics in the past that have failed. She just recently had her ileostomy reversed because her colon was finally not so inflamed! She has had no complications while being on Stelara and I give her the injections myself every eight weeks. My insurance is also covering it, so we pay just the $100/copay.
 

AZMOM

Moderator
My daughter has been on Stelara for over a year now and is doing great! She has been on all other biologics in the past that have failed. She just recently had her ileostomy reversed because her colon was finally not so inflamed! She has had no complications while being on Stelara and I give her the injections myself every eight weeks. My insurance is also covering it, so we pay just the $100/copay.



Your post has MADE my day!
 
My insurance refused me, so I am getting it free from Janssen at the moment. That is until May of next year, apparently, so hoping that it will be approved for Crohn's in Canada by then.

I am doing 90 mg every 8 weeks. Seems to be working. See my GI in a month, so will see what the bloodwork says. Hoping to get my CRP down. Down to 10 mg of pred (today) and am desperate to get off the stuff. I've had issues getting off before, but hoping against hope that this time will be different.
 
I'm doing my first dose of stelara tomorrow. I'm already on one immune suppressing injectable drug for ms kinda freaked out to adding another one. Here's to more needles!!! Weening of off pred at 25 mg right now will keep you posted!
 

AZMOM

Moderator
I'm doing my first dose of stelara tomorrow. I'm already on one immune suppressing injectable drug for ms kinda freaked out to adding another one. Here's to more needles!!! Weening of off pred at 25 mg right now will keep you posted!
I hope it goes well, Chocolatechick! Claire is also on Methotrexate. So we call it double-trouble. :) But so far, we have not noticed any unusual side effects with the addition of Stelara. Keep us posted!

J.
 

AZMOM

Moderator
Methotrexate is an immune suppressant as well. Typically patients start with 6MP or Azathioprine when they have IBD. Claire couldn't tolerate 6MP. Also, she has JRA and Methotrexate is used more in RA to help prevent joint damage. So between the intolerance to 6MP and the arthritis, we've gone with methotrexate. Unfortunately, it hasn't been enough on it's own to suppress the Crohn's disease.

You may read about a lot of folks using either 6MP or Azathioprine in addition to biologics like Remicade, Humira, etc. They suppress the immune system in general and aren't as targeted as the biologics. Some people take them to prevent building antibodies to the biologic (like Remicade). When those aren't options, Methotrexate often comes into play.

We are hoping that if the Stelara helps Claire achieve remission that we will be able to drop the Methotrexate and exclusively use the Stelara. Thats my plan (and the GI's too :)) if Stelara works for her.

Hope that makes sense. If not, there are folks that can speak much more scientifically and give you a more detailed explanation! Let me know and I'll tag them if you need more.

J.
 
Methotrexate is an immune suppressant as well. Typically patients start with 6MP or Azathioprine when they have IBD. Claire couldn't tolerate 6MP. Also, she has JRA and Methotrexate is used more in RA to help prevent joint damage. So between the intolerance to 6MP and the arthritis, we've gone with methotrexate. Unfortunately, it hasn't been enough on it's own to suppress the Crohn's disease.

You may read about a lot of folks using either 6MP or Azathioprine in addition to biologics like Remicade, Humira, etc. They suppress the immune system in general and aren't as targeted as the biologics. Some people take them to prevent building antibodies to the biologic (like Remicade). When those aren't options, Methotrexate often comes into play.

We are hoping that if the Stelara helps Claire achieve remission that we will be able to drop the Methotrexate and exclusively use the Stelara. Thats my plan (and the GI's too :)) if Stelara works for her.

Hope that makes sense. If not, there are folks that can speak much more scientifically and give you a more detailed explanation! Let me know and I'll tag them if you need more.

J.
Thank you! And yes totally makes sense. I've heard this drug mentioned in the MS world too so was curious how it worked with other drugs! I really hope stelara works for Claire! So hard to see your child suffering I'm sure. I had my first stelara injection yesterday. Fairly Uneventful slight headache and sore throat but nothing major.
 
Add my kid to the list of now trying Stelara ( ustekinumab) Doc just got her on a trial here for kids in Canada. This doesn't work it is surgery - permanent ostomy. Hoping this is the miracle I need it to be!
 
Recently, my doctor asked me if I thought the Stelara was working. I said I wasn't sure. I have only had two shots. Is that enough to really judge if it is working?

2
 
I think it take more than just the two shots to really tell. It does work though! My daughter was on every other med out there, and has been on Stelara for a year and a half or so, and her colon looks so much better!!
 
I'm doing my third injection today, I'd say yes it is working but being cautiously optimistic because I am still on 15mg of prednisone but in the last week I've had no pain or diarrhea when this used to be a daily occurrence even on prednisone. I've also noticed a big improvement in urrgancy Will keep everyone posted as I'm weening off the prednisone and will be done in two and a half weeks. Thank god cause I hate that stuff! It's a wonder my family is still alive!
 
Just checking in to see how everyone is doing? Off the prednisone, Chocolatechick?

First maintenance dose last week and I am cautiously optimistic. CRP was still high at 51 at last appointment, which was discouraging, so I am having it checked monthly and going back at end of October for another appointment. My white blood cell count was also a bit elevated.

My B12 was also quite low (can't remember number) so doing monthly shots for 3 months and then every 3 months to bring it back up.
 

AZMOM

Moderator
Had our first maintenance dose but fcp back up to 797. More labs in 3 weeks - doc says he feels like we should be seeing positive change with this dose or next.
 
Yes lgpcarter, off the prednisone. Seem to being doing pretty good on Stelara, fairly reg BMs not much pain just still have a problem with urgency better than before at least when I only had about 1 min to get to a bathroom I have about 10 min max now better but still very inconvenient I'm also having a lot of muscle aches and congested sinuses not sure if this is a side effect or not. What is CRP?
 

AZMOM

Moderator
Yes lgpcarter, off the prednisone. Seem to being doing pretty good on Stelara, fairly reg BMs not much pain just still have a problem with urgency better than before at least when I only had about 1 min to get to a bathroom I have about 10 min max now better but still very inconvenient I'm also having a lot of muscle aches and congested sinuses not sure if this is a side effect or not. What is CRP?

Measures inflammation. http://labtestsonline.org/understanding/analytes/crp/tab/test/
 
That's what I've been doing since starting maintenance dosing. Seems to be working well for me. Still a bit of a guessing game for IBD dosing.
 
I still have accidents. Worse now, since my fistulotomy and setons. I think the Stelara is still working for me, but there's only so much I can expect at this point.

Last time I saw my GI, he did say it can take up to a year to fully heal the gut.

I have shortened my dosing to every 7 weeks. Next dose is due Christmas Day, so will see how next week and the week after go.
 
Was just prescribe Stelera today. Had never heard of it before so happy to see an active thread about it on here.

A bit of background, I was diagnosed with UC at 18, struggled with it for a few years, in and out of remission, tried a lot of meds including pentasa, imuran, pred and a few doses of infliximab/remicade but at about 21 "opted" for a colectomy and reversal j-pouch. Pouch was great for 5+ years but then about 18 months ago developed perianal fistulae, 1 involving the urethra (I'm a guy, it seems a less common occurrence in males) which lead to having a catheter for about 8 months (not fun..). 1 seton put in place also.

For the 1st period of treatment it was mainly antibiotics (flagyl, cipro) but the fistula didn't close at all so I went. At this stage I had never been diagnosed with Crohn's so I went to another gastro to get another opinion, (surgeons only really think surgical solutions).

Did some bloods and my CRP level was high, sign of inflammation so I started Humira and imuran and (also rifaxamin for a period) and after a few months the fistula involving the urethra closed over, CRP level came down and MRIs showed up good so bye bye catheter, hallelujah.

All good for about 4 months but then the same fistula hit back, tried upping the Humira to weekly and upping the imuran dose but no joy. Just had bloods done again and CRP is back up again at 21. So we have opted to give stelera a try.

I'll let you know how it goes for me.
 

AZMOM

Moderator
Unforuntately Claire's calprotectin #s have doubled since last dose and her arthritis has flared as well. So frustrating. Her dose is increased to 60mg every 8 weeks. Fingers crossed.
 
How is everyone doing? Is it working for you Cotsy2? 8 months in and things seem to be going well with me. Struggling with some rectal scar tissue now (I poo ribbons! :) ) and the fistulas are still a bit of a problem, but things are definitely better.
 
Ive been on it for 8 weeks now. My 4th shot is due today, I did 3 90mg injections evey 2 weeks now stepping down to the maintenance of 45mg monthly.

Had some bloods done recently and my crp has come down to close to normal, so I guess that is good but no improvements with the fistula I'm afraid, still very much there.

Went to see my gastro this week and we've decided that I should get it checked out, so I'll go back to see the c/r surgeon and go under g.a. and he can try and see what's going on, its been close to a year since I was last knocked out for a look so I'm happy enough to do it.

Unless i get lucky it Feels like I'm going down the road of having to consider an ileostomy.
 
Thought I would check in. CRP is finally coming down, and I feel better than I have in a couple of years. Fistulas still an issue, but they have been much worse, and I can cope with where they are at now.
 
Stelara is not an anti_TNF, It blocks two proteins called IL-12 and IL-23 that may play a role in plaque psoriasis. This may slow down how fast skin cells are made and may reduce inflammation. It is a "sort of similar" approach as to how Entivio works, not an anti_TNF.

I was part of the initial trials for STelara for Crohns back in 2005. Received 8 injections and took me into remission. The manufacturer decide to market it as a psoriasis medication and have not used it for Crohns. Wish there were more prescribed uses for Crohns since it worked for me.
 
After failing pretty much all the meds under the sun, including Remicade, Humira, Cimzia, Simponi, combos and not combo, I had my first Stelara injection yesterday.

As my flare is quite severe and lasts since September, I must say I am expecting a lot from Stelara. Fingers crossed it works and quickly. I have 90 mg for the weeks 0, 1, 2 then 90 mg every 8 weeks.

The injection is the least painful I have experimented and anyway they barely give you the choice: the nurse comes every time for the injection. I won’t complain as I am not a huge fan of needles.

I’ll keep you updated about how it goes with this treatment!

Also, if there are people on it here, I’d be really interested to have your review about it!
 
I had my 3 dose yesterday. The next one will be in 8 weeks. So far I don't see improvment bet fingers crossed it will help soon!

I hope it works for people in this group!!
 

AZMOM

Moderator
Update - we are 1 yr on Stelara in May. My daughter is 12. We just had the BEST labs we have ever had and she is FINALLY feeling great. Honestly, the best she's been since diagnosis a year ago. Stelara is slow to get going and the road has been rocky, but I'm glad we stuck with it!
 
AZMOM, how long did it take to see any improvements? I had my 3 first doses and so far as soon as we try to tap the pred, my symtoms get worse! It's been 5 weeks since I began. It's been my worst weekend in a while, lots of blood clots and BM but it's hard to lose hope because next step is surgery.
 
Looks like the end of the Stelara road for me! Been on it for a year, but just out of the hospital with a partial small bowel obstruction due to inflammation.

The Stelara has really helped and I've actually been feeling quite good, with pretty normal stools and only 2-3 BMs a day. Still fairly active fistulas, mind you.

CRP was hovering in low 20s/high teens for a few months, though and I guess now we know why. Hoping to see my doctor next week to form a plan which looks like Entyvio at this point. Surgery only other option and I suspect they would recommend ileostomy for me because of fistulas and I am not sure I am ready for that.

Overall, Stelara was good for me for a year - no side effects, miles better to inject than Humira and I have felt pretty well. Best of luck to you all on it.
 
It's always too bad when a treatment stops working. I'm sorry it can't help you anymore, lgpcarter.

But Entivyo seems to be great for many people, fingers crossed it will work for you and you can avoid ileostomy..!
 

AZMOM

Moderator
It took a dose increase for us to see the difference. We've had three doses at the increased level. She has been on Stelara for 13 months. Hang in there!
 
Thanks. I increased intervals a while ago, up to 90mg every 7 weeks instead of 8. That maybe helped a bit, but obviously not enough.
 
Anyone on Stelara AND having Arthritis (Crohn's related or independent)?
I'm having peripheral Arthritis but also Spondylitis along with Crohn's and my doctor's don't know whether to try Stelara if I fail the Anti-TNF or not.
As far as I understand it seems to depend on the fact whether Crohn's is the underlying trigger for arthritis or not...
Any experience?
 
Wow, it's been 6 months since I last posted on this thread. I guess I've been distracted by actually feeling good and not spending my time google for treatments and stories.

My symptoms stopped back in about May when I had been on 45 mg of Stelara p/month, the last 4 months have been the best I've been in years, been really active, back playing football and even managed to gain a few kilos. My current dose of Stelara is 90mg per month as this is what my consultant thinks is the most proven successful in his experience.
 
Hey all, I just wanted to post a message of encouragement. I was on Stelara for about 9 month last year and I think it really began to work around month 6-8. I was putting on weight and number of BMs decreased. Sadly my insurance stopped paying for it because they would only approve the amount of doses allowed for psoriasis and I couldn't afford to continue. I'm still doing better than I was before it, so if you have to opportunity to try it, I would recommend it. Also, I don't remember any significant side effects (aside from irritation around injection). I wish you all the best luck!
 
The other day, someone had asked me that once I found out the dosage of Stelars to post it here. It is ninety milligrams per every one milliliter.
 
According to NHS (National Institute for Health Research), all trials for use in Crohn's Disease are expected to be complete by November 2018. *sigh*
 
They currently have me on Stelara but my last enterography showed active inflammation. I think after I see the specialist next month, they are going to want to change biologics.
 
For my insurance to cover it (which is a joke in itself since they've denied everything so far), I have to wait until it's approved/licensed for CD.

I hope you find something that is effective.
 
I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
 
I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
I just got off of it. It was given to me every eight weeks. I didn't notice any side effects. I wish you the best.
 
I've just been diagnosed with Remicade induced psoriasis so the dermatologist is applying for Stelera for me. I don't know much about it other than it costs a lot. Can anyone tell me how it's going for them - what kind of side effects can I expect? How often do you take it? I know it's an injection instead of an IV so that'll save time.
Thanks
Hi rrhood1,

How is it going on the Stelara? I'm going to be starting it later this week after failing Humira, Remicade, Simponi and now Cimzia. this will be my fourth TNF in the past year!

I'm taking TNF for Crohn's and associated spondyloarthritis.

Jonique
 
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