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Crohn's Disease Forum » Treatment » Stelara/Ustekinumab » Dangers, Side Effects


06-24-2017, 11:12 PM   #1
newdiagnosis
 
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Dangers, Side Effects

Is Stelara really as safe as it seems? I am thinking of starting stelara, as my physician does not think that sulfasalazine will work in my situation with arthritis. What are your thoughts? Its a relatively new drug and a biologic, but it seems like there are few side effects. Am I missing something?
06-24-2017, 11:19 PM   #2
ronroush7
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I was on it and i was ok.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
06-25-2017, 07:52 AM   #3
my little penguin
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Stelera like any drug has POTENTIAL side effects
All drugs have POTENTIAL side effects which people tend to forget
Infant Tylenol is given to babies and has the POTENTIAL side effects of liver damage, Steven Johnson Syndrome, and even death but most pediatrician simple say your infant has a fever or teething etc give them infant Tylenol.
Why because the benefits of the drugs far out weigh the risks of the potential side effects .

Typically doctors only prescribe a medicine when the benefits of that medicine out weigh the risks of potential side effects.

All biologics have similar risks
Including Stelera
One is not necessarily safer than the others

That said Ds was dx at age 7
Placed on remicade at age 8
And switched to humira at age 9 (he had an allergic reaction to remicade)
He developed arthritis in addition to Crohns at age 10 so
Humira was increased and mtx add.

He is 13 right now and really struggling with his arthritis
Stelera is the nextdrug of choice per his rheumo.

He has not had any real issues with biologics despite being in school around all the normal cough /colds or anything else for the past 6 years of biologics

If you have arthritis I strong suggest you see a rheumo to manage that side of the disease

Being afraid when starting a biologic is normal
Watching it work is like magic

But realize Stelera has a Crohns dose which is much higher than the arthritis dose but still can take up to6 months on average to start to see improvement

Humira take 3-5 months and remicade 6-8 weeks


Good luck
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06-25-2017, 01:34 PM   #4
newdiagnosis
 
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thank you for your reply "my little penguin." I am seeing a rheumatologist. Both the crohn's doc and rheum are on the same page. The rheumatologist recommended I try sulfasalazine first, but the crohn's doc thought it would not be effective for my ileitis. However, both agree that Stelara might help both the crohn's and arthritis.
06-25-2017, 07:00 PM   #5
Maya142
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Is there any reason an anti-TNF is not being considered (like Remicade/Humira)? Just curious, because those really are generally the first-line biologics for both arthritis and Crohn's.

Like my little penguin said, my girls have been on biologics for years without issues. We were TERRIFIED to put my daughter on - she was just a teenager. But finally, we decided the diseases were much scarier than the medications and put her on Humira.

It took 3 months, but it was magic. She went from being in pain, crying a lot, missing school a lot, having trouble walking to being a happy teenager.

With my second daughter, we agonized again but eventually made the decision. For her too, these drugs have been life-changing. She started on Humira too and has been through all the anti-TNFs - Remicade, Simponi and now Cimzia.

Stelara is approved for Crohn's and psoriatic arthritis. The Crohn's dose (90 mg) is much higher than the arthritis dose (45 mg), so I would make sure your GI prescribes it. It is also given with an IV loading dose for Crohn's and is more frequent (every 8 weeks).
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diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-25-2017, 08:36 PM   #6
newdiagnosis
 
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I chose stelara because it has a better safety profile than the anti-TNF inhibitors.
06-25-2017, 10:19 PM   #7
Maya142
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What kind of arthritis do you have? Spondyloarthritis or Ankylosing Spondylitis, or something else?
06-25-2017, 10:27 PM   #8
newdiagnosis
 
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Swelling of both knees.
06-25-2017, 10:36 PM   #9
Maya142
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Ok, just asking because Stelara tends to work less well for Ankylosing Spondylitis or axial spondyloarthritis - in both types, the spine is involved. It's in trials, but hasn't been approved.

If it's just two knees, have you considered doing steroid shots into the joint? That will get the pain and swelling under control immediately (usually).

It's not usually a long-term solution, you will need a maintenance medication. From your post, I'm guessing you have peripheral arthritis. That type of arthritis usually (NOT always) flares when your Crohn's flares.

Here is some info about the types of arthritis associated with IBD: http://www.crohnscolitisfoundation.o...plications.pdf

The goal with that type of arthritis is usually to get the Crohn's under control and the arthritis will follow. So I would choose the drug that you think will work best for your Crohn's.
06-25-2017, 11:26 PM   #10
newdiagnosis
 
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Thank you for your informative post Maya142. I tried one steroid shot a long time ago, and it only lasted for a few weeks. Also, steroid shots are VERY bad for the joint, especially that I am young. My crohn's is relatively under control right now with entocort, but that is not a maintenance medication. Furthermore, even though my crohn's is under control, my knees are still swelling. That is why I am resorting to stelara, unfortunately.
06-25-2017, 11:43 PM   #11
Maya142
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Steroid shots aren't best, I definitely agree. But when there is pain and swelling that just won't go away, they work well. A good steroid shot should last months, not weeks. For my daughters, they last 3-9 months.

And while they should not be done frequently, they are done even on two year olds with JIA. My younger daughter got her first in her knee when she was 12. Her knee was also aspirated - they removed the fluid - that worked well. She went from being unable to walk at all, to feeling normal.

Oral steroids, like Prednisone OR Entocort, are much more harmful in the long-term than biologics. My kiddo has had very hard to control Ankylosing Spondylitis (affecting her knees, feet, wrists, hands, elbows, jaw, SI joints, hips and lumbar spine) so we have had to resort to steroids often.

She has ended up with Cushing's syndrome and possibly adrenal insufficiency.

Believe me, the side effects of biologics are much better than those of long-term steroid use.

Here is a good presentation about the risks and benefits for IBD medications. Stelara probably isn't in there since it's so new, but Remicade and Humira are in there:
http://programs.rmei.com/CCFA139VL/

The risks are very small and the benefits are huge. Before biologics, kids with arthritis ended up with deformed joints, lots of surgeries and in wheelchairs permanently. Now, kids are able to run, play sports, attend school and just be kids because of these medications.

I am grateful for biologics daily.

But if I were you, I would choose the tried and tested biologics if it's for the arthritis - Remicade or Humira. They work faster than Stelara and have been around a lot longer.

The rheumatologists we have seen (and we've 21 between my two girls and husband) have all said anti-TNFs are much more effective for Spondyloarthritis (the type of arthritis associated with Crohn's) than Stelara is.

I would encourage you to get a second opinion with a rheumatologist if you're not comfortable with what the first one told you.
06-25-2017, 11:50 PM   #12
newdiagnosis
 
Join Date: May 2017
Thank you for the informative post. Ultimately, I chose stelara. My crohn's specialist said I could go with either anti-TNF or stelara (she preferred anti-TNF). Even though anti-TNF are firstline biologics, I am just not comfortable with the safety profile at this point. It seems that stelara has as good, if not better, safety profile than anti-tnf. If stelara doesn't work I will move on to anti-TNF. Also, the dosing regimen for stelara is nice (1 dose of IV infusion, then self injection every 2 months). My main concern is side effects, and I feel that stelara might work. If only the doctors had a crystal ball to predict which one would work for sure that would be great. Until then I guess it will be trial and error.
08-06-2017, 04:29 PM   #13
jazzygirl52
 
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Just had my first and last infusion with Stelara at the hospital.. Thank god it was at the hospital. I had serious side effects. My upper back and neck got rock hard stiff, I had numbness us the sides of my head and swelling of my tongue making it hard to swallow a bit, great thirst, and my lips got numb and itching. They brought me to ER with an allergic reaction to Stelara.

Treated with 60 mg prednisone and lots of benedryl. Was there for 6 hours, felt better so they sent me home after consult with my GI dr via phone..didnt think I needed predisone infusion. Went back next day with numb lips and some itching and dizzy.. they treated again same way, after it calmed down enough they gave me an rx for Prednisone 60 mg once a day for 5 days and said the side effects should lessen but could take a week or so or ?.

So I have it in my body and it's there for the 2 month dose it got.

Next time I will go in morning for any infusion I ever get again so my GI dr vs dr on call will be reachable via regular office hours, if I get an infusion ever again.
08-06-2017, 04:49 PM   #14
Guerrero
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I hope you'll feel better soon. Let us know.

Did they report a lot of allergies with stelara?
08-06-2017, 05:00 PM   #15
jazzygirl52
 
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Guerro, Serious Side Effects are :
Feeling Faint
Swelling of face, eyelids, tongue or throat
Chest tightness
Skin Rash
Common side effects:
Upper respiratory infections
headache
tiredness
itching
comiting
vaginal yeast infections
urinary tract infections
redness at injection site
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