Crohn's Disease Forum » Treatment » Ustekinumab

01-23-2010, 05:40 AM   #1
Nytefyre
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Ustekinumab

Hey All,

I thought I was going to start Cimzia soon but my GI has suggested another medicine called Ustekinumab, aka Stelara. It has been FDA approved for psoriasis but is being tested for Crohns. Anyway, I start with a 5 hour pre-screening on Monday, then the actual treatment in several weeks. Anybody out there on this med? Any side effects or problems?
01-23-2010, 08:13 PM   #2
Peaches
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*crickets* on this one huh Nytefyre? I'm trying to remember if I have heard of anyone on it here. I think Kimberlie's Mike may have mentioned it - but my memory isn't clear on it. I hope it works wonders for you buddy. These new drugs are getting so specialized for our area (the gut), I'm hoping it cuts down on the side effects for us.
01-23-2010, 09:40 PM   #3
imisspopcorn
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Good luck...Keep us posted on how it goes.
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01-24-2010, 06:47 AM   #4
Nytefyre
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LOL Peaches for the crickets comment But thanks to the both of you for the response. I will try to keep my experience up to date.
01-24-2010, 05:39 PM   #5
Procyon
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I've never heard of this drug. I like the name though -- "ustekinumab" is kind of fun to say. In any case, good luck, and keep us updated on how you do with it!
01-24-2010, 05:39 PM   #6
katiesue1506
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sounds like a country
01-26-2010, 07:07 PM   #7
Nytefyre
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Quick update. No Ustekinumab for me. One of the requirements was that I had to have protected sex for nine months. Couldn't do it as we want a little one soon. So I will be on Cimzia within a couple of weeks.
01-26-2010, 07:27 PM   #8
imisspopcorn
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I really hope the Cimizia works well for you. And good luck with the baby...9 months is a long time to have protected sex.
01-26-2010, 09:21 PM   #9
wqcoleman
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This drug was recommended to me today.. the pleasant side effect is that 1 in 5000 people develop a fatal brain infection and die..

1 in 5000 is the same odds of getting a hole in one, I've had two..

Odds of injury from mowing the lawn: 3,623 to 1
Odds of fatally slipping in bath or shower: 2,232 to 1
Odds of finding a four-leaf clover on first try: 10,000 to 1
Chance of dying from food poisoning: 1 in 3,000,000

My favorite odds..
Odds of a meteor landing on your house: 182,138,880,000,000 to 1
(I would take the drug if these were the odds)
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01-26-2010, 10:10 PM   #10
imisspopcorn
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Listen up, I once found 2 four leaf clovers within 5 minutes.....this was when I was a child, and I still got Crohn's....So much for lucky clovers.

Each person has to weigh the risks versus the benefits.....What are the odds you will die from a bowel perforation???? You might be facing those odds one day, if your disease is left unchecked.
01-26-2010, 11:47 PM   #11
wqcoleman
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I guess my point was.. 1 in 5000 is kinda scary..
01-26-2010, 11:55 PM   #12
imisspopcorn
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I'm sorry. It is scary. I guess, I have been in some dire straits as far being ill. I know what it is like to fear death. Not because I feared the medication, but I literally thought this disease would get the better of me.....Your fears are totally legitimate, but are they reasonable? If they are to you, (and your opinion is all that matters) then don't take the med. I apologize if I offended you.

I am wondering if the brain infection has more to with people who have MS. Since their immune systems are impaired to begin with. Are the infection numbers the same for Crohn's patients?
01-27-2010, 12:10 AM   #13
wqcoleman
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no offense taken...

when the doctor begins the discussion .. "there's this drug that works GREAT for crohn's patients..but.. there is a 1 - 5000 chance you will develop a fatal brain infection and die" .. that stopped any further discovery from me. If the cure is worse than the disease, I tend to have second thoughts.. very much how I feel about surgery, in that, it's the very last last last last last option to consider when all other avenues are exhausted.
01-30-2010, 10:14 AM   #14
Nytefyre
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wqcoleman said:
This drug was recommended to me today.. the pleasant side effect is that 1 in 5000 people develop a fatal brain infection and die..

1 in 5000 is the same odds of getting a hole in one, I've had two..

Odds of injury from mowing the lawn: 3,623 to 1
Odds of fatally slipping in bath or shower: 2,232 to 1
Odds of finding a four-leaf clover on first try: 10,000 to 1
Chance of dying from food poisoning: 1 in 3,000,000

My favorite odds..
Odds of a meteor landing on your house: 182,138,880,000,000 to 1
(I would take the drug if these were the odds)
So me and the missus talked about it and we are going to give the required ELEVEN months of sex with condoms (wife gets nutty on BC pills). I'm back on the study now.

But Will, this info is a little scary. Is the information posted online somewhere?

Last edited by Nytefyre; 01-30-2010 at 10:17 AM.
01-30-2010, 12:49 PM   #15
wqcoleman
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I got it from my doctor.. I looked for a link for it.. but I would imagine they wouldn't want to post that regarding their miracle drug.. they are all miracle drugs..
01-30-2010, 07:05 PM   #16
Peaches
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Will - do you remember exactly what kind of brain infection your doc was talking about? Do you remember them mentioning the JC virus or PML? I can't find either of these things associated with risks for this drug. I'm actually not finding any stated brain infection type risks other than the usual mess people who take TNF inhibitors are at risk for. Are you sure it was Tysabri that your doctor was thinking about putting you on?

Either way Nytefyre - I'm sure it goes without saying to see what all the risks are in writing before starting this thing. Someone I'm close to is involved with the Vendolizumab study (hope I'm spelling it correctly) and he says it is looking very promising -just in case that might be an option for you as well.
01-30-2010, 08:00 PM   #17
kasper87
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Brain infection? you mean PML? Thats Not Usetikimumab. Thats TYSABRI
01-30-2010, 08:04 PM   #18
Nytefyre
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kasper87 said:
Brain infection? you mean PML? Thats Not Usetikimumab. Thats TYSABRI
Yeah, I did see that about Tysabri, as well. It's floating around online.
01-30-2010, 08:29 PM   #19
Peaches
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That's what I'm thinking - just don't want anyone getting misinformation about a potential new drug. It might not be what he was talking about - just wondering.
01-30-2010, 09:04 PM   #20
wqcoleman
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not sure, he threw so many drugs at me.. all I remember is 1 in 5000 get a brain infection.
04-26-2011, 02:59 PM   #21
Jennyram
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I've been on Stelara for four months, just got a flare. The rare side effect of brain infection is reversible for Stelara and not TYSABRI, that's why I refuse TYSABRI. Will not be on Stelara anymore, isn't working. Ten thousand dollars a syringe, now that's crazy!
04-27-2011, 08:55 AM   #22
ThanksP
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Is this still in clinical trial phase? I've been waiting on a trial to open but I have no idea which trial it is lol. I'm meeting with my doc tomorrow to finally find out more info about it. I wonder if it's for this drug.
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04-27-2011, 09:53 AM   #23
Jennyram
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I wasn't part of any clinical trial but I know there was a small number of CD patients who responded well. My doctor is always on the forefront of new research, he is amazing but this drug certainly didn't help me. Actually, my fistulas and CD got worse! Stelara has a rare chance of brain infection, but unlike TYSABRI which is fatal and non-reversible, it is reversible with Stelara. At least that's what I'm told. Good Luck!
04-27-2011, 12:58 PM   #24
glum chump
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Stelara just finished up Phase II trials, and will go to Phase III at some point, but I don't think they're quite there with the next phase for this drug.

I was on the Phase II trial, and it really helped me. I've asked the company to release it to me on compassionate grounds, but they said no. This was after my GI, the GI who was the primary for the drug trial, the local Trial Coordinator and myself wrote letters to the company. We also tried through my insurance company, who (surprise-surprise) turned me down as well.

And since I can't get Stelara, I'm having a permanent ileostomy since there's no other drug other than Stelara that has worked. Pooey, I say!
04-27-2011, 02:15 PM   #25
Rebecca85
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Just noticed something. Odds of fatally slipping in the bath or shower 2232 to 1? Assuming someone only has the most basic level of hygeine, and gets in the bath or shower once a week (?!), that would mean on average, fatally slipping in the bath or shower every 42 years or so. Given that life expectancy is somewhere around 70-80 years of age (can't remember offhand), everybody can expect to fatally slip in the shower once or twice in their lifetime.

(sarcasm) So who cares if you get a fatal brain infection from the drugs? You're going to die in the shower anyway! (/end sarcasm)

My point is, statistics can be twisted and interpreted in different ways. Even interpreting it in the 'correct' way, you're twice as likely to die from slipping in the bath or shower as getting the brain infection. I guess the question is, are your symptoms bad enough that you want to take that risk?
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04-28-2011, 12:03 PM   #26
ThanksP
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Looks like the study I will be participating (as long as I'm not excluded) is for an interleukin. Don't know the first thing about it but I'm trying to research everything I can. This stuff is over my head though...wow.

Edited to add...Wait, the more I look, Stelara *is* an "interleukin". Maybe it is this after all. Guess I just have to be a patient patient and wait to hear fromt he research coordinator...

Last edited by ThanksP; 04-28-2011 at 01:59 PM.
04-28-2011, 08:08 PM   #27
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I have heard of Stelara. I have seen it advertised on TV multiple times for psoriais. I looked it up on their site. I would say that it is probably almost the same as all the other biologics that are out right now.
08-08-2012, 11:13 AM   #28
ravensfan88
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I contacted a local endoscopy center about their clinical trials and this drug was one of them.

It was explained to me that it's very similar to what Remicade does.

I didn't qualify for the trials because you have to have failed previous drugs and not be on anything currently or it would obviously skew the results.

Anyway, I know I'd try it if I had no other options - so to anyone else looking into it, I'd go for it. Good luck!
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08-09-2012, 05:31 AM   #29
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I contacted a local endoscopy center about their clinical trials and this drug was one of them.

It was explained to me that it's very similar to what Remicade does.

I didn't qualify for the trials because you have to have failed previous drugs and not be on anything currently or it would obviously skew the results.

Anyway, I know I'd try it if I had no other options - so to anyone else looking into it, I'd go for it. Good luck!
Other than the fact that it is a biological medicine Ustekinumab is not comparable to Remicade at all. Ustekinumab addresses IL12 and IL23 while Remicade focuses on TNF.
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