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User Reviews for Ustekinumab to treat Crohn's Disease

Also known as: Stelara

Ustekinumab has an average rating of 5.8 out of 10 from a total of 37 ratings for the treatment of Crohn's Disease. 46% of those users who reviewed Ustekinumab reported a positive effect, while 38% reported a negative effect.

Ustekinumab Rating Summary

5.8/10 average rating

37 ratings from 39 user reviews.

Compare all 111 medications used in the treatment of Crohn's Disease.

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Reviews for Ustekinumab

Jethrox · Taken for 1 to 6 months June 2, 2021

Stelara (ustekinumab): “Stelara has controlled my UC very effectively, however, my mobility has been affected as I have aching joints and stiff muscles that is particularly bad after I’ve been sitting or driving.”

6 / 10
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Karezig · Taken for 6 months to 1 year April 19, 2021

Stelara (ustekinumab): “I was diagnosed 20 years ago and had a right hemi colectomy 15 years ago, Humira stopped working for me so I was changed to Stelara 6 months ago. First couple of doses intermittent headaches and felt tired but kept on them. Started with water infections, bad constipation resulting in internal bleeding and haemorrhoids, really tired and depressed caused by the constant headaches and joint pain so I'm giving up with them,”

2 / 10
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Zot · Taken for 1 to 6 months December 18, 2020

Stelara (ustekinumab): “I want to give Stelara -5 but I can’t. No effect after 18 weeks.. Avoid this expensive drug.”

1 / 10
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Frequently asked questions

Charlie April 7, 2019

Stelara (ustekinumab): “I am going into my 8th week post my initial IV infusion on Stelara and so far so good. I recently got diagnosed with small bowel fistulizing Crohns and my GI doctor and I decided that Stelara would be the best treatment option for me before trying any other option. I experienced a decrease in abdominal cramping immediately after the initial treatment but the other symptoms persisted. At the 6 week mark all my Crohns symptoms decreased significantly. My appetite is back and I am putting on some weight, and I am having normal bowel movements. My chronic eye inflammation has also significantly decreased which makes me suspect that it is indeed Crohns related. I am only in the beginning stages of treatment but the impressive results makes me so hopeful and honestly has made me forget that I had Crohn's to begin with. No negative side effects so far but I did notice it has taken me way longer to get over a cold, but nothing other than that. Praying that this continues to work for me!”

8 / 10
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JJ October 18, 2019

Stelara (ustekinumab): “I had crohn's for 30 years been on loads different treatment, loads hospital stays but after 4th injection my stomach is now great!! No joint muscle pain more energy. Walk my dog miles everyday over forest .. it’s miracle !!.. so happy ”

9 / 10
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Sicily · Taken for 1 to 2 years December 15, 2019

Stelara (ustekinumab): “I'm a Crohns survivor for 44 yrs. Tried all the old meds some new. Remicade worked best for 3 yrs and 6 MP for 4 yrs. Humira worked for 9 yrs but all symptoms returned. Stelara was my golden hope. First 8 months..nothing! Now one year after initial IV infusion...much better results...almost too good. Constipation is my norm. Painful gas constantly...bloating..exhaustion...and a simple head cold took forever to leave. Not sure I will continue this. Body aches and joint pain much worse. My main issues are constipation and exhaustion. I'd rather have diarrhea and a bit more energy. Very disappointed! Good luck Crohnies!!”

8 / 10
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Nicole · Taken for 2 to 5 years July 14, 2018

Stelara (ustekinumab): “Amazing drug that has put my Crohn's into remission! Humira, Remicade, Cimzia, Entyvio, 6mp, Lialda, all failed to work for any period of time. I have Fistulizing Crohn's and had 3 feet of resection 2 years ago. Two years on Stelara and I have my life back. I also changed my diet to the Mediteranean, avoiding simple sugars and eating only healthy food. Changing the gut microbiome along with finding the right medicine is key to controlling Crohn's. Much research now is pointing to the role of healthy gut microbiota. Stelara is so simple to inject with it's tiny syringe! Lower risk of serious side effects than other medicines in it's class! Amazing!”

10 / 10
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Mikey Mouse · Taken for 1 to 2 years April 30, 2019

Stelara (ustekinumab): “I was diagnosed with Crohn's Disease in 1995, although I have been fighting with a bad stomach much longer. I have had 4 feet of my intestines removed through 4 different resections. ( usually 1 every 5 years.) I have been on Cimzia, Humira, steroids and lialda. I started Stelara in the summer of 2017, It stopped me from throwing up almost every time I ate, I still get cramping, but not nearly as painful as I did before. I am putting on some weight, thanks to some help. I remain hopeful that Stelara will continue to help me fight this crappy disease. I hope it helps all who take it, until a cure can be found. Love”

8 / 10
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Lobo · Taken for 6 months to 1 year May 31, 2020

Stelara (ustekinumab): “I was diagnosed with Ulerative Colitis in 2006, but did not start biologics until 2017-2018. Started with Humira and found that I was a nonresponder. For the rest of 2018, and into 2019, I tried other meds and battled with my insurance on which medicine is covered based on their formulas. During those times I was not responding to anything, developed fistulas, and was found to have my UC progress to Crohn’s (or I may have had Crohn’s all along). I started taking Stelara and I feel great. My symptoms have improved to where I don’t think about them. I have my life back. I do take longer to get over respiratory infections and do have some joint pain, but I did also before Stelara so nothing new there. The one side effect I noticed is ringing in the ears sometimes. Stelara has changed my life.”

9 / 10
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JMS · Taken for 6 months to 1 year November 18, 2020

Stelara (ustekinumab): “I am 55 and was officially diagnosed with Crohn’s about 10 years ago after many tests and misdiagnoses. I am convinced I’ve had it for probably 20 years. I tried Humira, Entivio and Stelara. The first two caused significant joint pain and brought no improvement to my Crohn’s. I started Stelara 10 months ago and am now in remission for the first time since my diagnosis. No significant side effects other than some fatigue the day of and day after the injection. Very happy with this medication. Easy to use and only once every 8 weeks. Good luck to all those searching for their own ‘right’ medication. Stick with it and don’t lose hope!”

9 / 10
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Vicki · Taken for 6 months to 1 year April 23, 2018

Stelara (ustekinumab): “I have Crohn's Disease and tried three different medications and broke out with Psoriasis from head to toe. Lost my hair and the ability to walk faster than a snail because my feet swelled up. Since Stelara, I have lost over 60 lbs, Psoriasis completely cleared, hair growing back. I exercise at least 3-4 times a week and feel wonderful. I think Stelara helped my digestive system and now everything is working. Biggest problem with Stelara is, now I have to get a new wardrobe.”

10 / 10
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Lucy · Taken for 6 months to 1 year August 26, 2018

Stelara (ustekinumab): “Been on Stelara for a year now. Have seen relief of symptoms but meds do not stay in my body. We are now dosing every 4 weeks starting this month. I’m concerned about the long term effects of taking this medicine. Over these past 6 years I have been on 5 different biologics and none have helped me so far.”

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LynnSanta · Taken for 1 to 6 months July 4, 2018

Stelara (ustekinumab): “After 41 yrs of Crohn's & being non responsive to all treatments, including biologics, I've been on Stelara now for 16 weeks, & I'm starting to see a real difference !! I was reluctant to believe that it would work but, I'm ecstatic that something may actually turn things around for me. Best yet, NO Side Effects !! ”

8 / 10
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Steelersfanatic · Taken for 1 to 6 months June 1, 2020

Stelara (ustekinumab): “4 weeks after my initial loading dose my Crohn's is already much better, however the fatigue it is almost too much to bear. Despite having Crohn's disease I can usually get through the day and be productive. But on this drug I don't want to get out of bed. ”

7 / 10
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Life with Crohn's · Taken for 2 to 5 years October 31, 2017

Stelara (ustekinumab): “Stelara's been a great for me. I'm 64, have had Crohn's for 50 years and undiagnosed for 20 years until my mid-30's. I'm now in the best shape I've been in decades--no cramping pain for 3 years since starting injections. Been biking 30 miles a week, playing flag football and basketball, working with weights and a trainer 3x weekly. No side effects--yay!”

8 / 10
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POOH · Taken for 1 to 6 months September 11, 2019

Stelara (ustekinumab): “I am worse on Stelera then I have ever been, I'm on it for Crohn's. Been hospitalized more now then before!!! I have had something going on in my stomach since I was 10 years old. I've been embarrassed, ashamed, frustrated, and exhausted. I am 55 years old. I have had 2 surgery's which I am blessed cause I know there are many that have many more. A million colonoscopys. So Many perceptions. All I want is some normalcy in my Life. I've used three doses so far... Done with it!!!”

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Rach · Taken for 6 months to 1 year June 26, 2020

Stelara (ustekinumab): “Stelara put my severe Crohn’s disease into remission and it has stayed that way for the past 6 months. The shots don’t hurt very bad and it’s only 1 every 8 weeks for me! Side effects I’ve noticed: headaches, fatigue, groggy day after shot.”

10 / 10
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Sunny3 February 13, 2020

Stelara (ustekinumab): “Stelara was effective in the sense that it quickly healed my colon that had Crohn's disease. I would be thrilled except that after a few doses I developed horrible anxiety/depression, tinnitus and headaches. I have been on other biologics without these issues. I did not feel like myself anymore, so I chose to stop it because the negative outweighed the positive. Everyone responds differently.”

5 / 10
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KrullX · Taken for 1 to 6 months August 28, 2017

Stelara (ustekinumab): “Stelara has worked fantastically for me where Humira was a failure. I found that the biweekly Humira shots were not enough to control symptoms but the initial 8 week infusion of Stelara has been great.”

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Lindy Loo · Taken for less than 1 month May 8, 2020

Stelara (ustekinumab): “I have recently had my second bowel resection for Crohn's and today have started my first infusion of Stelara. No other drug has helped unfortunately. Chronic constipation, bloating and an inability to digest or process food has left me not really eating at all for the past 2 years. I am hopefully this drug will give me a quality of life again but am also aware the side effects may become an issue. The depression side of things may be interesting as I am bipolar...hopefully I'm covered there..Good luck to us all on our journey.”

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Crissymarie90 · Taken for less than 1 month February 9, 2018

Stelara (ustekinumab): “I am on week 2 on the initial Stelara IV infusion. So far, no side affects! (As I had with Humira, Cimzia, and Remicade). I have noticed that I am able to tolerate milk a bit more than I was able to prior. Not as much gas or abdominal cramping. Looking forward, and hoping the medicine will help me achieve remission!”

4 / 10
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Kate · Taken for 1 to 6 months June 25, 2020

Stelara (ustekinumab): “I've been on Stelara for Crohn's for over 10 weeks with poor results. I am losing the remission created by remicade. Stelera caused me exhaustion and I have stomach aches, sensitivity and bowel struggles.”

3 / 10
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Joe · Taken for 6 months to 1 year November 24, 2020

Stelara (ustekinumab): “Stelara was a 1 star for the first 24 weeks. The waiting period was ridiculous. I just did my third at home injection so today puts my 32 weeks in I did not see any results until about 24 weeks on the medication. Stelara works for crohn's you just have to give it time to work. Now we are starting to work on the dosing schedule to prevent flare ups around dosage time.”

9 / 10
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The lakes · Taken for 1 to 6 months October 25, 2016

“Wow. I have tried every medication from 6mp methotrexate humira infliximab vedolizumab etc. all failed in the end and my latest try vedolizumab didn't work at all. I was in a flare for 8 months my Consultant said the only option left was to remove my colon. I have never been in so much pain and weight loss. Then I got a call from the hospital saying the drug company was willing to offer me ustekinumab. It's not licensed in the UK yet for crohns so I wasn't sure. But omg within 9 days of treatment I've never felt so good . I must admit in those 9 days when I never felt anything I thought it wasn't going to work then boom I woke up one day and felt amazing. If you get offered this amazing drug just give it time and it will work wonders”

10 / 10
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Karin · Taken for 1 to 6 months October 9, 2020

Stelara (ustekinumab): “No side effects (only fatigue), but not working very well to control Crohn's flare-up. Don't use this if you have severe active flare, you will not be able to control your disease. I'm switching to anti-tnf.”

2 / 10
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Christina May 26, 2020

“I was diagnosed with crohn’s disease at age 22; I am currently 34. For 10 years my disease was unmanageable, and I suffered a great deal. I have tried every biologic, and every Crohn’s medication with no luck. Two years ago I began using Stelara, and this drug has saved my life and offered me a shot at remission. I did still flare for the first six months, but I have basically achieved a full remission. During my remission on Stelara I was able to carry to term my first pregnancy; a true miracle that wouldn’t have been possible without this medication. I decided to withhold my injection in the third trimester, and postpartum so I could breast feed. I am one and a half months postpartum, and I am developing a flare up so I will resume my injection. Me and baby are both healthy so far. I wanted to share my story because I know that I wasn’t able to find a similar account when I was looking for answers.”

10 / 10
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Christy · Taken for 6 months to 1 year February 7, 2020

“Crohn's disease for 20 years (diagnosed in 2000), 2 resections (2009 and 2019). Started with Stelara infusion in September and am going today for my 2nd shot (get them every 8 weeks). I can say, so far, Stelara is my life saver and has given me my life back. Starting helping almost immediately with the debilitating gas/bloating and while I still have nothing but watery stools, they have gotten less and the intensity of when they hit has lessened. Hopeful it continues this good. Best wishes to everyone battling this awful disease ❤”

10 / 10
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Dani · Taken for 1 to 6 months May 2, 2020

“Been on Stelara for 6 months and I’m still experiencing pain and diarrhea. I do feel a little better especially during the first month after the injection. The last 2-3 weeks before the next injection symptoms return. Stelara kinda works. But I haven’t experience true relief yet. Remission, not really. I think, for as expensive as the medication is and the side effects and the fact that it works only a little, it’s not worth it. Then again, other biologicals might not work at all or very little. So try it anyways. Good luck!”

5 / 10
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This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.

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