Ustekinumab and Diarrhea: What Users Say

• RG1...
• September 12, 2016

Ustekinumab for Psoriasis "I've been battling severe scalp psoriasis for 6 years, as well as the beginning of psoriasis in my genital region. Topicals didn't come close to helping. I was on Otezla for 3 months, but the side effects (vomiting, diarrhea, and headaches) were horrible. I tried Humira for 5 months, but it didn't reduce the plaques enough. After my first Stelara injection, there was a dramatic decrease in my scalp psoriasis, and the few patches on my genital region disappeared completely. After the second injection, my scalp is 80% clear with no itching or burning. The injection itself is pain free, the needle is maybe half an inch. I haven't had any side effects either. Highly recommend, I'm so happy with the results!"

• Jun...
• Taken for 1 to 2 years
• February 1, 2022

Ustekinumab for Crohn's Disease "I've had Crohn's for 30 years. Tried Remicade, Humira, now Stelara. The only thing it's doing is worsening my diarrhea. Not helping the Crohn's, but the day of treatment and for weeks after, diarrhea is greatly increased. No other effects. Would be a great medication for those with chronic constipation!"

• Chr...
• Taken for 6 months to 1 year
• February 7, 2020

For Crohn's Disease "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 lifesaver and has given me my life back. Starting to help 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 ❤"

• Anonymous
• Taken for 6 months to 1 year
• December 3, 2018

For Crohn's Disease "Only lasted for a few months, during this time, I developed joint disease that previously was not an existing issue when I was on infliximab. I have experienced frequent flares of diarrhea and joint pain while on this drug and have found it not very useful for maintenance (this is my experience, so I suppose it differs for everyone)."

• Dan...
• Taken for 1 to 6 months
• May 2, 2020

For Crohn's Disease "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 experienced 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!"

• Kee...
• Taken for 1 to 6 months
• March 1, 2022

Ustekinumab for Crohn's Disease "Was on Stelara in 2018 for 5 months because my GI told me I couldn't stay on Pentasa forever. I luckily have mild symptoms of Crohn's when on nothing or Pentasa, but then when I switched to Stelara, I thought it'd make my stools nicer and just help with remission (because although I don't feel like I have Crohn's, my colonoscopies and first hospitalization prove me that I do). On Stelara, I experience a lot of fatigue/low energy, feeling like I had more symptoms than usual/cramps/nausea, looser stools than when on Pentasa. So I got off of it, never went back to get injections, and went back on Pentasa, but those pills are way too big, so I stopped taking them, and I started feeling worse. But I never actually saw my results/bloodwork/stool check while on Stelara, and I decided to give it another shot and see how well it's actually working on me. I'm again super tired, crampy, bloated, gassy, can't get over a cold. Hoping to see if it's all worth it at my next bloodwork and colonoscopy!"

• Pat...
• Taken for 1 to 6 months
• April 27, 2018

For Crohn's Disease "I’ve been on Stelara for 8 weeks now. Had the second shot yesterday. The shots don’t hurt. The effectiveness, it’s hard to say. I have the occasional solid BM but still have diarrhea and gas. For you guys and girls that have taken it, especially for the older gentleman that has taken it, how long before you noticed major improvements? I do not want to keep taking stuff that has little or no effect. Patrick."

• Mar...
• Taken for 1 to 6 months
• January 13, 2021

For Ulcerative Colitis "I have been suffering with UC since 2007. It took a good while before anyone could diagnose me. It’s been a long, scary, and tiresome road, tried nearly all oral meds, nothing worked. Been on/off steroids prednisolone, which have had major joint side effects now. Started biological Humira but wasn’t responsive. Finally onto Stelara. After the first injection within a few weeks, I felt a positive difference. Now onto my 5th injection, just a few days ago, however, not feeling too good. Loose stool, diarrhea, tiredness, and fatigue slowly creeping back. Trying to stay positive as everyone responds differently. Good luck, everyone, stay safe."

• Mar...
• Taken for 1 to 6 months
• January 13, 2021

For Ulcerative Colitis "I have been suffering with UC since 2007. It took a good while before anyone could diagnose me. It’s been a long, scary, and tiresome road, tried nearly all oral meds, nothing worked. Been on/off steroids prednisolone, which have had major joint side effects now. Started biological Humira but wasn’t responsive. Finally onto Stelara. After the first injection within a few weeks, I felt a positive difference. Now onto my 5th injection, just a few days ago, however, not feeling too good. Loose stool, diarrhea, tiredness, and fatigue slowly creeping back. Trying to stay positive as everyone responds differently. Good luck, everyone, stay safe."

• Dan...
• Taken for 1 to 6 months
• April 3, 2021

Ustekinumab for Ulcerative Colitis "Stelara did not work for me. Within 2 days of both the loading infusion and the first maintenance subcutaneous injection, my symptoms worsened-much more bloody diarrhea and pain. Had to discontinue."

• nik...
• Taken for 6 months to 1 year
• October 15, 2024

Ustekinumab for Crohn's Disease "Seem to get less gut aches, but after 3 days from injection, always get diarrhea."