Ustekinumab and Pain: What Users Say

• Pai...
• June 30, 2015

Ustekinumab for Psoriasis "Using Stelara has been nothing short of amazing for me. I didn't have 95% body coverage like some of the people here, but my hands were completely covered, and it seemed to be spreading onto my wrists and up my forearms. The pain was excruciating, and I was emotionally exhausted from constantly trying to hide what was happening to me. I'm a musician/educator and spend a great deal of time in front of people. I do feel that Stelara saved my life. I am 100% clear of all signs of psoriasis. No itch, no bleeding, no pain, just normal-looking skin. I am also completely alleviated from the mental strain, anxiety, self-consciousness, etc. What an amazing change in my life."

• ree...
• May 24, 2014

Ustekinumab for Psoriasis "Psoriasis cleared completely after the first injection. Now, 6 weeks after my second one, it's starting to come back on my head. I'm also experiencing difficulties deep breathing while exercising and when I exert myself, also elbow and knee pain. Being an active exercise person, this is dramatically affecting me now."

• The...
• Taken for 1 to 6 months
• October 25, 2016

For Crohn's Disease "Wow. I have tried every medication: 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 Crohn's, 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."

• Anonymous
• Taken for less than 1 month
• May 7, 2018

Ustekinumab for Psoriasis "I've had spots of psoriasis since my early twenties - mostly limited to my elbows and a couple spots here and there on my legs. However, I got a strep infection in February and got an outrageous covering of guttate psoriasis. Nothing would help - I went through 3 bottles of different topicals, went to the tanning beds with little to no difference. I was on antibiotics to make sure the strep was gone and my stomach was unhappy about it. Finally got my first shot of Stelara last week. I have limited insurance, so I was grateful for the assistance program. Within a couple of days, the spots seem less angry - less pain, itching, and not as bright red. The patches are still there, but appear to be fading. I'm praying the progress continues!!"

• 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!"

• Kyl...
• Taken for 6 months to 1 year
• August 9, 2022

Ustekinumab for Crohn's Disease "I was diagnosed with Crohn's in February of 2022 at 35 (I'm 36 now). Symptoms began around 2018. I've taken the initial IV and 3 injections, all 8 weeks apart. About 4-6 weeks after the IV is when I first began to notice improvement. My fatigue and weakness have been the only 2 symptoms that I've yet to have improve. My last 2 labs have shown a low white blood cell count and a 'bottom of normal' range B12. I'm a testicular cancer survivor recently, so I'm still getting regular blood work done. So fatigue could be coming from the low B, and we are testing for leukemias. I've gone 3 weeks without vomiting, which is a 10-month record for me. Stelara has helped a lot with the pain, fevers, bloating, rectal bleeding, etc. But I haven't quite gotten back enough to be confident out of the house."

• 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."

• zip...
• February 13, 2018

Ustekinumab for Psoriasis "Hair loss, more plaques, weakness, infections, irritable bowel syndrome (IBS), eyelash gone, pain remains but less."