Ustekinumab and Tiredness: What Users Say

• Sic...
• Taken for 1 to 2 years
• December 15, 2019

Ustekinumab for Crohn's Disease "I'm a Crohn's survivor for 44 years. I tried all the old meds and some new ones. Remicade worked best for 3 years and 6-MP for 4 years. Humira worked for 9 years, but all symptoms returned. Stelara was my golden hope. The first 8 months... nothing! Now, one year after the 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 are much worse. My main issues are constipation and exhaustion. I'd rather have diarrhea and a bit more energy. Very disappointed! Good luck, Crohnies!"

• Bbe...
• Taken for 1 to 6 months
• September 9, 2021

Ustekinumab for Crohn's Disease "Just started Stelara. I can tell I'm very tired, and it gives me a little tummy pain and a sore throat. I'm bloated but always have been on and off. Harder stools at times, constipated. I've had 3 bowel rejections and now have 2 fistulas. I'm praying I can get rid of my second one being on Stelara. I'm still having a few flare-ups with fistulas, but hope I will work, yet just started. I'm going to ear, nose, and throat doctor tomorrow. I've had ear pain, inner ear, and headaches, and not sure if any is related to Stelara. It started at the same time and hurts more a bit now, but just had an injection 2.5 weeks ago. I'll keep everyone posted! Has anyone noticed eating issues or headaches, sore throat, and coughing up a little phlegm?"

• Cle...
• November 3, 2013

Ustekinumab for Psoriasis "I have had psoriasis since I was 4. Been on everything from biologics to light therapy. Stelara cleared me up but not without a price. I'm a very healthy, exercise-minded individual. Since being on, my blood sugar is off, I have night sweats, swollen breasts, feet, hands, swollen tonsils, and tiredness. My vitamin D levels are also low. Went off Stelara for 6 months and every side effect went away. Flared up and went on it again and all symptoms came back!"

• POO...
• Taken for 1 to 6 months
• September 11, 2019

Ustekinumab for Crohn's Disease "I am worse on Stelara than I have ever been. I'm on it for Crohn's. Been hospitalized more now than 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 surgeries, which I am blessed because I know there are many that have many more. A million colonoscopies. So many perceptions. All I want is some normalcy in my life. I've used three doses so far... Done with it!!!"

• Kat...
• Taken for 1 to 6 months
• June 25, 2020

Ustekinumab for Crohn's Disease "I've been on Stelara for Crohn's for over 10 weeks with poor results. I am losing the remission created by Remicade. Stelara caused me exhaustion, and I have stomach aches, sensitivity, and bowel struggles."

• Kar...
• Taken for 6 months to 1 year
• April 19, 2021

Ustekinumab for Crohn's Disease "I was diagnosed 20 years ago and had a right hemicolectomy 15 years ago. Humira stopped working for me, so I was changed to Stelara 6 months ago. The first couple of doses caused intermittent headaches and I felt tired but kept on them. Started with urinary infections, bad constipation resulting in internal bleeding and hemorrhoids, really tired and depressed caused by the constant headaches and joint pain, so I'm giving up on them."

• Ric...
• May 31, 2013

Ustekinumab for Psoriasis "45 years with psoriasis. Tried everything - no luck. On Stelara for three years now. Wonderful experience. Only side effect is I am always tired, but I can live with that as I no longer have any symptoms. Wonderful medicine but very expensive. This would be the last medicine I would give up if I had to give up my meds."

• Daw...
• Taken for 2 to 5 years
• January 11, 2022

Ustekinumab for Crohn's Disease "I started with Humira when my disease was so horrible. I was in the hospital every month for two years, and it never worked. I’ve had 5 surgeries since 2016, and Stelara was a lifesaver for me. I started Stelara in the beginning of 2019, and I am still not in remission, getting close, but it definitely makes me feel better, and I have no side effects. No bleeding, which was a serious problem for me. Maybe tired, but I am always tired! Stelara and my awesome GI doctor have saved my life."

• Tob...
• Taken for 6 months to 1 year
• December 28, 2019

Ustekinumab for Psoriasis "After the load Stelara shots and before the first maintenance dose, my psoriasis cleared up almost completely. Then it stopped working. I now also feel lethargic and am depressed, crying for no reason. I will be trying something else more targeted for psoriasis. There have been a lot of new products coming out now, some of them are just for psoriasis. I am glad I gave it a try, though."

• Anonymous
• Taken for 2 to 5 years
• July 31, 2017

Ustekinumab for Psoriasis "I'm a 65-year-old male. Psoriasis since I was 30. Tried every RX and treatment there was with little help. Now into my 4th year on Stelara, and it's been a blessing. No issues with my skin. Completely clear and no side effects for me other than tiredness. Otherwise, in great health and take no other meds. It's the best. I'm thankful."

• 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!"

• 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."

• kat...
• Taken for less than 1 month
• May 23, 2019

Ustekinumab for Crohn's Disease "I'm 2 weeks post IV of Stelara. They told me it might make me tired, and the first week I was exhausted beyond belief. The 2nd week, I'm not as tired and having more and more normal bowel movements."

• kat...
• Taken for less than 1 month
• May 23, 2019

Ustekinumab for Crohn's Disease "I'm 2 weeks post IV of Stelara. They told me it might make me tired, and the first week I was exhausted beyond belief. The 2nd week, I'm not as tired and having more and more normal bowel movements."

• Pet...
• Taken for 1 to 2 years
• April 1, 2022

Ustekinumab for Crohn's Disease "I've been taking Stelara for 1 1/2 years now for Crohn's. I haven't gotten worse but haven't gotten better either. It also makes me super tired. That could be the Crohn's too."